AZOOR

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I'm 29 yrs old and was diagnosed with AZOOR about a year after I finished high school. I would really like to meet others who have AZOOR and who understands what I'm going thru. I've actually posted about this before & got some replies, but I believe that post got deleted.

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How are the Azoor photopsias?



How are yours?, I was diagnoses but still have to do an ERG, in my case I have these small dots of light, always in the same position, that I see in some sunlight conditions, not when its fully bright or sunset. Its like 11 dots around the middle of my right eye, I see them when I blink mostly.

I developed an scotoma on 2015, left eye, two more in the following two years.

On 2017, I got two scotomas in a month in my right eye, and the photopsias

I'm 39 yo.

I also have another symptom that puzzles me, do you also have gel like stuff coming out from the corner of your eyes?, like jelly that even changes shape when you squeeze your eyes or blink and its like darker than the usual vision?

Have you reserached about a possibel fungus infection as a cause?


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Morning All,

I am new to the world of Azoor having only been diagnosed within the past 2 months. I have been going through tests since May.

I am from Scotland (Paisley) and I was just wondering if anyone has had difficulty with driving since AZOOR came along. I am finding it particularly difficult in dark country roads when cars on the other side are coming with lights on. I was a very confident driver before this. I'm only 33 and feel scared to drive at night.

Pam


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Hi Friends,
I'm not sure how active this message board is, but I figure I'll throw it out there. I was just diagnosed with AZOOR after about a month of not being able to see out of my right eye. I'm just wondering what your experiences have been in the early stages of this. I find myself having a difficult time processing and remembering things. I feel kind of like I'm in a dream where I can perceive what's happening but I'm not really connecting. I don't know if that's normal or if this is just my experience. I don't really feel like I have much medical support or how to go about getting that. What did you all do??


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Hello - I just posted a very long reply but it seems to not have published. I'm 27 years old from UK and am currently undergoing tests. I've been told by doctors tey think it might be azoor. At the moment all I have is sporadic flashes in 1 spot in my left eye. I had a fluroescin test today and find out the results tomorrow. I'm so anxious. Did anyone else's eye issues start with flashes? The post I wrote included a long history of my experience but no time to type it all out again now! At the moment I have no vision loss. Would appreciate hearing others initial symptoms.

Thanks
Elle


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Hi Nicole
I haven't heard of anyone with azoor going blind, which is reassuring but no guarantee. Part of the problem is that there seem to be many, difficult to diagnose, azoor-like conditions and some may do better long term than others. Also it's possible to develop other eye problems, like cataracts or glaucoma, along with azoor. So regular eye tests to check for other treatable conditions are really important too. And keep in mind that healthy older eyes need more light and better contrast that healthy young eyes. That's normal.
If you find yourself worrying about going blind, here's what I suggest:
* get your eyes checked.
* do things you enjoy, and that help you relax.
* treat yourself to something bright coloured (a garment, a pot plant...whatever) that is easy to see, to enjoy and to treasure.
Best wishes, Lynley


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Hi Lynley,
I'm glad you found something that helps you a little. I've come to realize that the lense definitely matter! Have you ever heard of anyone with azoor going blind??

VAPM,
That makes a lot of sense! Do you know what causes it to decrease?



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I have shared your post with a low vision specialist who said, " the person’s problems sound like they’re strongly tied to decrease in contrast sensitivity function—something widely overlooked in regular eye exams, and unfortunately, even many times in low vision exams. The doctor may tell the patient that their vision is “stable,” yet the person feels like their vision is declining. The real problem may be in a decrease in contrast sensitivity function (CSF).

This person reports everything looks 'dim' and 'hazy.' These are two good descriptions of decreased CSF. Why is a cell phone so helpful—because it enhances the contrast, and makes things brighter. The same is true of a portable digital magnifier or a CCTV (video magnifier). Digital devices enhance contrast, making images brighter. Most people just think of magnification—making things bigger. What is often most helpful, however, is making things brighter, and enhancing the contrast."




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Hi Nicole - Sorry to hear about your vision, but hey! what a fascinating discovery with your cell phone camera. I've used my cell phone camera to take photos of things like street signs that are too far away and blurry to read. Then I enlarge the picture on screen. Doing that enables me to read the street name and thereby check that I've found the right street. Also when the optometrist gave me new glasses that he didn't think would make much difference, I looked at the sign at the end of his waiting room - in big blue letter that was just a blur with my old glasses - and suddenly the blur had gone and the words were clear. The problem wasn't magnification - the words were big enough to read. The problem was that my eyes made the blue go so blurry I couldn't distinguish the letters. They were still the same size through my new glasses, but the blur had gone. I suppose there was something about the lenses on my new glasses that causes less scattering of blue light. I don't know what was going on, but it may be worth asking your optometrist about trying different lenses of the same magnification to see which ones enable you to see more clearly. There may be some sort of coating they put on lenses. I don't know. But your experience with the cell phone camera, suggests it's worth following up. Good luck!


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Hi All,

My vision seems to be getting worse. Everything looks more dim to me and hazy. However I discovered that when I'm looking through my cell phone camera I can see everything much clearer and brighter. It's pretty crazy. Sometimes I even use my camera phone to see certain things when I'm doing something or even while I'm walking around I can see so much better through it. People think I'm taking pictures or videos but really I'm not LOL. I wish that there were a glasses that was just like my camera phone lens so I could function and see better. Has anyone else noticed or experienced this??


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I meant to say if the medication can't damage your eyes .. :)


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Hi Deb
I think most of understand how you feel, the issue is AZOOR is not a disease as such it's a group of symptoms that form a syndrome my specialist admit they really don't know much.

If the medication can damage your eyes it's worth a try if the side effects a minimum I would try anything, I not sure about injections as the uveitis specialist told me there is a risk of damaging the vision I have.

I have had it in both eyes from the start I think I have lost more having folks up ERG etc this week will see.

Mine started in 2014 but vision loss only Aparant last 12 months and I have lost 80 percent or more of my peripythal and shimmering 24/7 including in my central.

I hope this makes sense typing on my phone and I can't proof read it.

Jenny


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Dear Deb - it's Lynley here. I'm a peer advisor for the azoor discussion board. What an awful quandary you're in. No matter how much information we get, in the end we have to make these decisions for ourselves because azoor affects everyone differently. I was put on steroids briefly seven years ago when I lost central vision in my L eye very suddenly and nobody could figure out why (no sign of clot or bleed, blood pressure & eye pressure normal etc, etc). When the blood tests showed no signs of autoimmune disease I was taken off them. Over the following months my R eye developed all sorts of strange visual aberrations which settled down a bit after a while. I'm left with very slow dark/light adaptation, terrible colour vision and deteriorating visual acuity. I've also developed glaucoma and am taking drops for that. So I'm not in your position and I don't know what I'd do if I was. It's so difficult when we want to take positive steps to help ourselves, but we don't know what those steps are, or whether they will improve things or make them worse or make no difference.
Do you know whether your retinal specialist thinks there's a good chance that the cellcept will improve your condition, or whether he/she just doesn't know? Maybe, like you, he/she's feeling helpless and wants to try something on the off chance it just might work. It may be worth asking, because the answer could help your own decision making.
I think the biggest problem with deteriorating sight is that it doesn't just affect our eyes, it affects our whole lives. It's hard not to spend most of our waking hours worrying about - is my sight worse today than it was yesterday, or the same, or better? So as well as working on this decision, Deb, do spend some time doing whatever you enjoy doing that takes your mind off the problem for a while. You need and deserve a bit of rest and relaxation. Big hugs, Lynley


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Hi all, I am a 62 y.o. retired nurse who has been dealing with AZOOR for several years and finally got the diagnosis last year. Started in my R eye, gradually affecting the peripheral then eventually most of the central vision in that eye over about 10 yrs. My L eye was suddenly affected peripherally about 3 yrs ago and has progressed in that eye until my lateral central vision is starting to be affected.
It really is a quandary when you get to this point where your best vision is in jeopardy and the majority of the information out there is telling you that there is no treatment, but your retinal specialist offers you an immunosuppressant (Cellcept). I feel like I really need to try this drug, even though I know the possible side effects because I'm afraid of losing even more vision than I already have. As you all are aware, we will all develop different degrees of visual loss from this condition, although most of us will not be blind. I'm hoping that this prediction holds true for everyone, but I feel that I will have significant loss due to the fact that the damage just keeps marching onward.
I guess I'm asking for others' feedback about experience with trying immunosuppressants, such as development of side effects, results of treatment, etc.
I'm torn between feeling like I'm not doing anything to try to stop the damage if I don't try the drug, and feeling like it's not going to do any good and may cause more problems.
Thanks, and I do so appreciate the comments I've read so far. Take care all !!










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What helps me keep my mood up is that I make plans. i.e. I just finished interviewing and selecting a roofing contractor. We will have a new roof in a couple of weeks.

I work at finding doctors who understand that I have a broken traffic signal in my head with a waving flag. We always have options. I won't stay with a doctor who is full of B.S. or who is dismissive of my present situation or is completely clueless.

I don't want comfort from a doctor. I want someone who gets AZOOR and offers what they know.


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Antecedent illness.

I would describe mine as a few days of malaise. I felt more tired than usual. Then, I got my first big orange blast.


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So far, there are 4 treatment options for AZOOR.

Option a: steroids and immune suppressants

Option b: acupuncture, herbs, supplements, vitamins

Option c: do nothing

Option d: valacyclovir

None of these are a cure*


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Hi Kang8mao
Sorry about the delay in getting back to you, I've been travelling. This is a very frightening time for you, made harder by the fact that most people have never heard of azoor and have no idea what you're going through, but you have found a group of people who understand on this discussion board. i hope that helps.
One of our biggest, often unspoken, worries is: am I going to go blind? Of course no one can predict the future, but i have never heard of anyone going blind from azoor. Everybody is different, but most people find that the first six months are the worst. Partly because the worries take over our lives - we might be distracted from time to time by daily necessities like buying food and doing the washing, but in the time we normally spend humming happy tunes or enjoying TV the worries burst in and take over. This anxiety will fade over time for several reasons - the main one is that you come to realise that, despite your eye troubles you are still you - whatever happens with your eyes doesn't alter the fact that you are still the strong, interesting, smart person you always were and your friends and family still love you. Also azoor often settles down with time, or at least becomes less annoying as we get used to it.
You've found yourself in a situation that you don't want and don't deserve. It's so unfair. But hang in there kang8mao, searching for this group and making contact shows that you're on the way to getting your head around what's happening. It shows that at a time of great anxiety and stress, and of feeling overwhelmed, you're doing all the right things to figure out how to cope. Congratulate yourself. You're doing really well.
Do keep in touch with any questions, and let us know how you're getting on. Best wishes, Lynley


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kang8mao,

Lynley must be out of town. I hope you are discovering more about AZOOR and how it applies to you. No one can tell you exactly what to do... not even a lot of doctors. That is the result of having a rare disease that everyone guesses at and wants to help with and often doesn't know exactly what to do. More common diseases have lots of cadavers to study and years of observation. You will be a part of the AZOOR discovery as it is only about 25 years old. Study about AZOOR and decide what is right for you and realize that you are one of the pioneers with this syndrome.....disease.


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kang8mao,

I see you first because of the time zone factor. What has helped me most is to read as much as I can about AZOOR. Knowledge is power. You are not alone! The colors, lightening and flashing , what doctors call 'photopsia' is really annoying and a common part of AZOOR.

Lynley is our peer advisor. She'll be around when it is her time zone.


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Hi everybody, I am a newbie here. I was a graduate student from Hong Kong having a eye sight lost since last Sep. Fortunately in the first two visit to doctor in mainland China I was diagnosed as AZOOR, which seems to be quite clear: I have done ERG and result shows some dysfunction of macula lutea However they do not have the steroid good enough for injection, so I have to take 40 mg a day. It seems help little, the blind spot was getting larger..and after three months it seems stabled. I felt relax but just a month later I found new flash photopsias again, after another two months it get stabilized, however, now (just a week later) there seems to be another photopsias which gets more close to the central of my vision...I was so scared that I may lost my eye sight and cannot continue my study...
Is there anyone know that how long may this AZOOR takes before it stablized, or may it relapse from time to time? I cannot sleep well these days because of the uncertainty. It is really a terrible feeling that you cannot have your life in control...and it is just sliping into hell...
Another question is that, my ophthalmologist in hong kong suggests me to take steroid injection (she does not even know AZOOR! she just said it is inflammation). I was wondering, is there any risk of doing injections? is it worth trying?
Thank you so much


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Dr. Moy wrote this for the 2015 NMOA Convention newsletter. I have been looking for a new report from Dr. Heckenlively about 'AIR'. I haven't found anything on the internet at this time.

It is interesting to note that he has seen 450 cases, as Dr. Gass began with 13.


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AZOOR WHAT IS THAT!!! - A ZEBRA??
SubmiZed by: Deborah Moy, OD

AZOOR is the acronym for Acute Zonal Occult Outer Re,nopathy. You may ask yourself, I never have heard about this re,nopathy; well I asked the same ques,on to a re,nal specialist that I had the pleasure of mee,ng when I was in his exam room at the Kellogg Eye Ins,tute in Ann Arbor Michigan. Yes, I was the pa,ent and not the doctor; yes I was the mystery case AKA “A ZEBRA”. I went to all of my colleagues here in Albuquerque and they ordered specific blood tests, MRI, CT scans, FA, OCT, VF, ERG and Fundus Photography with auto fluorescence to eliminate any of the serious pathology that would cause a significant change visual field loss, decrease VA’S and CME with significant central vision distor,on. All of my blood work was normal, nega,ve for re,nal an,bodies, MRI and CT scans showed no tumors in the brain and no cancerous tumors of the organs. There were several key symptoms that I was experiencing, blue flashing lights in the shape of a C, significant visual field loss temporally greater than 30 degrees and approximately a 10 degree central field open OU as indicated by the Humphrey perimeter, significant decrease of VA OU with central distor,on, most likely CME and a very abnormal ERG.

All of my colleagues knew that I had a rare form of re,nopathy, but no one could make a defini,ve diagnosis, which was extremely frustra,ng to me as a pa,ent. Aber some extensive research on the internet and a shout out to Dr. Steven Charles in Memphis, TN, we found a re,nal dystrophy specialist, Dr. John Heckenlively in Ann Arbor, MI. Aber finishing all of the diagnos,c tes,ng that Dr. Heckenlively ordered, I had an intensive consult with him and he knew what my diagnosis was before I had an opportunity to even ask any ques,ons. He diagnosed me with AZOOR, which I replied, what is that? To my surprise, he explained and described the disease to me very plainly as he has seen this rare auto immune re,nopathy before and has treated approximately 450 cases. It was that day that I became a pa,ent in his clinical study, lucky me, and of course I was just thrilled that I finally found a re,nal specialist that could understand my symptoms and could provide treatment and management to hopefully stabilize the disease and my central vision.

If you are s,ll curious on the subject you may want to Google it, what you will discover is that it is AIR (auto immune re,nopathy) / AZOOR is an extremely rare eye disease that is not well published. You might ask why do we as Optometrists need to discuss these types of rare re,nopathies. Well, because you could have a pa,ent that presents weird and strange symptom; AKA the “ZEBRA”, and have performed every diagnos,c test you can think of and have confusing results just as in my case history. This “ZEBRA” pa,ent will be seeking answers as to the cause of his/her eye condi,on. For the “ZEBRA” pa,ent, not knowing whether or not you are going to lose your vision isstressful and frightening. This issue was my worst nightmare as it is for every pa,ent that has any pathology that can result in permanent vision loss. This was my reason for wri,ng this ar,cle is to raise awareness about this rare AIR. I was diagnosed with this disease in June 2014 by a Re,nal Dystrophy Specialist at the Kellogg Eye Ins,tute, University of Michigan Ann Arbor.

I had to make some rough decisions on what to do with my career and my prac,ce plus cope with the extreme changes in lifestyle, mainly the acceptance of being visually impaired. These are life ,me adjustments that many pa,ents with visual impairment have to cope with on a daily basis. My journey through this change has been significant and ironic. Prac,cing Optometry for the past 30 years and suddenly having to re,re due to a rare eye disease. What are the odds on that?! Just FYI being sighted for most of your life and suddenly becoming legally blind is a LIFE CHANGING moment. I can aXest to that, my white cane trainer is totally blind and I am currently learning how to manage my environment with a white cane. The white cane is my friend and used as a tool allow me to move around with confidence. Optometrist should not be afraid to recommend low vision aides and or a white cane to improve the pa,ent’s lifestyle. These services are provided by the State of New Mexico Commission for the Blind. I had to find out on my own that with my visual impairment I qualified for services from this state organiza,on. My message to you is that it essen,al for you to listen to the symptoms that your pa,ent is expressing to you, because you the doctor could be the hero that can save your pa,ents vision. Educa,ng your pa,ent on visual loss is crucial especially if there is any chance for re,nal damage. So when I discovered that this AIR disease results in permanent visual field loss in the periphery mainly all of the rods, but typically spares the central vision, I felt the need to share this rare disease with you. These were the symptoms that I experienced.

Generally this disease occurs in females with high myopia, poor night vision, constricted visual fields, can be unilateral or bilateral, photopsia very common, systemic autoimmune disease is not always a major factor, CME (in my case it was) could be present, significant change of VA, OCT indicates abnormal swelling of the op,c nerve fiber ,ssue (not in my case due to extreme op,c nerve ,lt), Western Blot Test shows posi,ve for re,nal an,bodies. Consul,ng with a re,nal specialist that has experience with this disease is crucial to the pa,ent’s outcome. The latest ar,cle on this disease will be published some,me this year by Dr. John Heckenlively, since he is one of the few re,nal dystrophy specialists conduc,ng a clinical study on AIR. If you want more informa,on about this disease you can do a Google search and you will find a few excellent ar,cles. I hope that this ar,cle was helpful to many of you. If you have any ques,ons, please do not hesitate to ask me about my experience with this disease. Thanks, AKA THE “ZEBRA”


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I don't try to block the photopsia out. I find it tires me out too much and it doesn't work anyway. I just live and let it do it's thing.


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Dear Blind Family,

Please understand that the prospect of 20-30 years of daily, sometimes 24/7 photopsia makes AZOOR patients just a little bit crazy. Padded cells, anyone? If I could only get relief from that I would be happy. I don't care about a cure. Just make it STOP!


Cynthia


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One way to look at it is that when you work for doctor, you have to negotiate a salary and benefits. They are human just like you. And, some are better surgeons and some are better with patients and some are better with one disease than another. Doctors get sick, too.


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Our lives would be so much better if the doctors were more direct about our treatment options. My neuro told me to take Occuvite. He didn't even tell me which one.

When I called and asked about valacyclovir the student said he said no. He told the student to tell me to come back when "he can see something". Ha! The fancy machines aren't good enough for this guy. He wouldn't talk to me directly. Well, bye bye to him and on to another neuro who has talked to me directly.

Moral of the story is don't let any doctor push you around. There are other fish in the sea. You get the treatment options that you can live with.


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Re: acute macular retinitis/AZOOR
Posted by drdeborahmoy on 11/15/2014 at 2:05 PM

Hi Maryb286.. I have been diagnosed with AZOOR. I went to see a specialist in Ann Arbor Michigan at the Kellogg Eye Institute. His name is Dr John Heckenlively. I am an optometrist who was in private practice for 30 years. I made the difficult decision to retire and sell the practice to get this disease under control. I am currently in Dr Heckenlively clinical study. There is no cure for the disease but there is treatment to arrest the disease. There are only a handful of retinal specialist that have seen this disease and can manage it because it is so rare. I would highly recommend Dr. Heckenlively because he has so much experience with this particular disease. Any questions please feel free to contact me. Dr4eyes

I thought I would move this over here, too. Dr. 'H' is an autoimmune retinopathy specialist. He uses a mix of drugs and vitamins FYI. There is a lot to think about with what, if anything that I should do about AZOOR.


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Jenny,

If you would like to, please let us know how you are doing over time.



Cynthia


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Jenny,

What lovely words you said, "I have learnt to be happy to be heard and understand when they can't help."


Cynthia


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Lynley,

I am still just in one eye. I have greater odds having it in both eyes than having it stay the same.


Cynthia


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acute macular retinitis/AZOOR

Posted by mariamm on 1/21/2014 at 2:16 PM

Hi, I was diagnosed with acute macular retinitis 20 years ago. Later it was reclassified under AZOOR. My symptoms worsen every 7-10 years or so. Latest flare up has resulted in almost full loss of central vision in my left eye. I tried Prednisone about 10 years ago. Did not improve my vision, unclear if it helped slow the process down. I am looking for recommendations for specialists who are actively doing research on AZOOR.


I thought I would move this over here.

Anyway, I have now come full circle with my AZOOR research. What a pot pourri.


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Hi everyone. We have a new article up in the eye condition section about AZOOR. It is written by Dr. Patel Gupta. She describes AZOOR as follows:
"The cause of AZOOR is not known, although it is thought to be related to an auto-immune process, whereby the individual's own immune system damages the outer, or peripheral, retinal cells."
Here is the url for the article:
http://www.visionaware.org/info/your-eye-condition...


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Hi Lynley and Cynthia
I went to a specialist asking for a steroid injection I was worried about the risk then we started talking and I mentioned I have been getting cold sores more often since AZOOR I use to only get th every three or four years now it's every couple of months so for me he thought it was worth a try

I am taking Aciclovir 800mg twice daily.

He also said AZOOR is a syndrome not a disease as such we are grouped together because of our symptoms and we are all unique what may help one person will not help another. I asked him so I could even have RP and he said yes.

I have learnt to be happy to be heard and understand when they can't help.

I have found a great psychologist to help me deal with my sight loss.

Jenny


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Cynthia - mainstream medicine can be very frustrating when it doesn't have all the answers, but that's because nobody has all the answers and doctors have a duty not to promise more than conventional medicine can deliver. Of course you want to take positive steps to help yourself, but you're dealing with a rare condition for which there is no known effective treatment and an uncertain outcome (but it sometimes resolves spontaneously).
Your hardest task, but the one that will bring you most peace of mind, is to face up to the reality that you're stuck with azoor and to learn to get on with life while living with that uncertainty. If you find a doctor who will give you what you want then you'll either be dealing with a well meaning physician who has caved in to your nagging, or quack who preys on anxious and vulnerable people for money. Doctors go into medicine because they want to cure diseases and make people better. That's what they're trained to do. Anti vitals have been tried for azoor, but there's no evidence that they work and since they may have side effects that nobody wants IMO you're better off without them.
Cynthia - I am worried that some of your comments seem irrational.
Don't kid yourself that getting a doctor to give you antivirals or anything else is 'research'. Research is meaningless without large scale controlled trials.
You're obviously still very angry that the doctor didn't even recommend an aspirin for what could be a virus. Why? Aspirin isn't an anti-viral.
And why are you 'dreading', and lining up a doctor to prescribe an anti-viral for, 'the inevitable recurrence'? There may never be a recurrence. It sounds to me like you're willing yourself to have a recurrence so you can get some antivirals. Come on Cynthia you can do better than that. It's time to stop and take stock. You're digging yourself into a deeper and deeper hole. Stop digging. Start figuring out how to climb out. Lynley


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Dear Lynley,

There would be no valacylover without the proper research.

I still have my 93 year old mother who has outlived 3 husbands. She plans on jumping out of an airplane when she hits 100. I have every confidence that you are in the same league.

Let's see how things develop. I am going to call and ask my neuro if he will consider valacylover when I have the inevitable recurrence.

It was a beautiful day today. I am a happy person.


Cynthia


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Oh and Jenny,

I still see color blobs every day but not as many as my first 18 months of AZOOR.

I have begun my 3rd year and am dreading the recurrence.


Cynthia


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Hi Jenny,

It's nice to see you again. The doctors usually refer to the attack phase as either relentless or lasting about 6 months or more. Yes, it is the 24/7 light and blob show.

Can I ask what antiviral you are on?


Cynthia


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Hi All
I haven't been on here for a while.
Cynthia I'm not sure what you mean by the attack phase?
Do you mean the light show if so I have been in the attack phase for 10 months with no rest.
Interesting I am now on antivirals I am on day 6 will be on them for a month before I go back to see specialist.
I believe I am seeing some improvement in my night vision I can now see outlines in the dark. Shimmering in eyes hasn't changed though but it's early days.

Jenny


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Hi All
I haven't been on here for a while.
Cynthia I'm not sure what you mean by the attack phase?
Do you mean the light show if so I have been in the attack phase for 10 months with no rest.
Interesting I am now on antivirals I am on day 6 will be on them for a month before I go back to see specialist.
I believe I am seeing some improvement in my night vision I can now see outlines in the dark. Shimmering in eyes hasn't changed though but it's early days.

Jenny


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And, I understand that the valacyclovir is only meant to help stabilize the vision and shorten the attack phase. It is not a cure.
It might make us more comfortable.


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Lynley,

I think to tell us that it could be a virus and not even recommend an aspirin is ridiculous and appalling. They seem all too willing to hand us over to the rheumatolgists because its might be autoimmune. I understand what you are saying. And, I think that when it comes to AZOOR doctors just might hand us leeches instead of methodically trying antivirals. They don't want to become laughing stocks or be drummed out of their profession. There must be a middle ground somewhere.


Cynthia


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Cynthia - asking a doctor to test an unproven treatment on you without, at the very least, having a clear understanding of the ailment and it's cause is IMO asking the doctor to give up medicine and practice quackery instead. It will do nothing to advance our understanding of AZOOR. I know how anxious people with AZOOR are to find a cure, but it's not going to happen over night and we can waste a lot of time obsessing over it in the meantime. Or we can look around us and be grateful for all the good things in our lives, and enjoy them. There's a lot more to life than azoor. Lynley


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OK Azoor family Cynthia is editorializing again,

Dr Mahajan is hanging out in ophthalmology space for us. He is not as far out as Dr. Heckenlively. Do what you want but do support them. No, I am not seeing either one at this time. But, they offer an open door to what options are available to us. There aren't that many you know. Most doctors are uninformed or unwilling to risk their careers to do off label experiments on us. But at least 2 of them don't just push us off to the rheumatologists to do their experimenting for them. These 2 don't play is 'safe'. Well, I'll keep looking around to see who else might have the 'cajones' to pioneer another way. And, I thank the doctors with some 'cajones' that support these colleagues.


Cynthia


Re: AZOOR



Thanks for the message.

I think there are number of patient diseases that are hard to categorize, and AZOOR is one of them.

In my series, I think we had an interesting subset of patients, that is probably not represent of all patients that are called "AZOOR". If in fact there are subset of patients with a viral etiology, treatment during an active phase is appropriate. There are a lot of viruses where treatment during the inactive phase has no effect.

There are probably a lot of AZOOR category patients where there may not be a viral etiology. So, I suspect there are many patients that even treated acutely may not respond, because it is not due to an active virus.

I'm not sure where you live, but in most places acute vision loss will get you an urgent appointment with a retina specialist.

Sincerely,

Vinu

Vinit B. Mahajan M.D., Ph.D.

University of Iowa
Department of Ophthalmology
200 Hawkins Drive
Iowa City IA 52246

319.356.8161
mahajanlab@gmail.com
mahajanlab.org

Thank you for the reply! I hope that you are not working late every night. I know what you mean about AZOOR. I am still occult and have no other of the AZOOR complex except perhaps blind spot enlargement. ( I am 63 years old). The attack phase is unforgettable to say the least. Dr. Gass and Associates described the visuals very well.

Thank you. I am impressed and appreciative.


Cynthia


Re: AZOOR



I just sent this email off. I'll let you know if I hear anything back.

Dear Doctor Mahajan,

I am an AZOOR patient. I have done a considerable amount of reading and came across your idea about catching the active AZOOR recurrence symptoms within 2 weeks of onset. That using valacyclovir 3 grams per day for 1 week then 1 gram per day for 3 weeks then taper will help stabilize the vision.

Naturally, getting an appointment that quickly is difficult for patients and doctors. It could be possible if a patient could just call in and say that the attack phase is on again? Or would a doctor need the usual battery of tests before beginning? I have heard from other patients that valacyclovir during the inactive phase does nothing for them.


Best regards,

Cynthia Smith


Re: AZOOR



Yes, Cynthia - grief is undoubtedly a major but often unrecognised aspect of sight loss. I think it's often mistaken for depression. The Kubler-Ross book is a classic, though it's now known that the order of the stages of grief can vary, as can the duration. Different stages can recur at different times and in different order, but gradually with the passage of time we begin to see more blue sky through the clouds.


Re: AZOOR



Hi Lynley,

We have talked about several books on our AZOOR journey. I would like to add, "On Grief and Grieving" by Elisabeth Kugler-Ross and David Kessler.

They are the ones who describe the five stages of grief: denial, anger, bargaining, depression and acceptance. The focus of the book is dealing with the loss of a loved one. But, it can relate to the loss of vision as well.


Cynthia


Re: AZOOR



Hi Chloe, it sounds to me like you're doing everything right. Well done. I'm sure you have to push yourself to keep going at times, but what's the alternative - curling up under the bedclothes and feeling miserable. Ok, no harm in doing that too when you need to - you'll have your ups and downs, so take care of yourself and get on with doing stuff too.
I know what you mean about moving shapes - mine were a bit like blobs in lava lamps, moving slowly around in any direction. I still see them occasionally, but they're less noticeable.
I think azoor throws our lives into turmoil because asking questions and finding answers is part of being human, so not having answers seems unbelievable as well as frustrating. We're also used to thinking that tomorrow will be pretty much like today, so when something dramatic happens it comes as a shock. But really, when you think about it, there are heaps of things in the world that we have no answers for, and heaps of things happen that we weren't expecting.


Re: AZOOR



Hi Lynley!

I can say I have yet to see it calm down, I still have a lot of the dark periods and it's still kinda developing, I tend to see colors and moving shapes, don't know if anyone else has experienced this as well. Uncertainty is a huge challenge but I'm ready to face it and move along with my life, whether this azoor fades away or stays, I try to get out and do as much as possible but at times it is hard. Like you I have never heard of anyone going blind from this, and I hope that stays. Somedays I can't think about anything else but what the outcome of this might be. I appreciate everyones thoughts and concerns that has reached out to me and the uplifting words. You are all amazing.

- Chloe.


Re: AZOOR



Dear Chloe - I'm a peer advisor for VisonAware. I developed azoor 6 years ago. Your heartbreaking story brings all the anguish of that first year flooding back. The sudden onset of weird visual disturbance, the frightening realisation that no one knows what's happening, or what the future may hold. And then having to give up so much that you've worked so hard for. I'm much older than you, but one of the terrible things about azoor is that it is more likely to strike young people like you with a great future ahead of you. Chloe, there's lots we can discuss, so I won't try and say everything all at once - just a few things that might help. We can follow up with whatever questions or comments you'd to discuss. So for starters, a few thoughts:
- it's hard to think about anything else apart from what's happening with your eyes, but it's important to remember that you're still the smart, strong, lovely young woman you were before the azoor. Your friends and family still love and care about you.
- most people find that azoor settles down after about a year, or at least we get used to it, and find ways of getting on with our lives. Learning to live with uncertainty is one of the biggest challenges. We can talk about that some more another time.
- nobody knows what the future may bring, but I've never heard of anyone going blind with azoor.
- make a list of all the things you can still do, despite the azoor, and surprise yourself at how long that list is.
- make a list of all the things that make you feel relaxed - walking in the park, listening to music, whatever works for you... and do them.
Big hugs, Lynley


Re: AZOOR



Hi everyone,

I'm thankful to have found this site. My name is Chloe I'm 19 and I too have this AZOOR. Started about a year ago last June, I woke up one day and couldn't see out of half of my right eye, it had spread over to my left eye and was back and forth for some time. I was back and forth from Albany Medical Center, Mass Eye and Ear in Boston, my regular eye doctor. Saratoga, and NYC. Many months of not knowing what was going on with me and if I would ever regain my vision back. The endless testing and worrying with all of this is exhausting. It's in a way better to know I'm not the only one that goes through this endless cycle. I'm currently looking for a Retinal Specialist in the New York area if anyone has any recommendations. I would love to hear more about anyones story and compare. Feel free to email me chloeeuebrick@gmail.com or add me on facebook: Chloe Uebrick. I hope one day they find a cure to all this. I was a freshman in college with this started and have since then not gone back, I lost my driving privileges, I played basketball in college and had to give that up for some time too. I hope none of you have had to give up everything you have worked hard for because of this.


Re: AZOOR



I understand that it is hard to talk to the doctors about the photopsia. I'm old and don't care what they think. My impression is that they just don't get how awful and unpredictable it is. We never have a warning. We don't know which 'kind' will show up and for how long.


Re: AZOOR



My photopsia continued:

Sometimes part of my vision stretches like pulling taffy.

Sometimes I see bouncing balls-like watching a Lotto drawing. Sometimes the balls have 'tails' that make them look like wiggling worms.

Sometimes I see foggy, colorful 'paint splatters' on a smokey grey wall.

Sometimes part of my vision melts into a flapping, fluttering electrical blur.

Twice now, my vision has gone from color to misty black and white and back to color. Now I know how color blind people must see. I do think the neon colors are particularly beautiful.


Re: AZOOR



I have experienced the photopsia of every person here. Yes, it varies. Sometimes it is lightening which can be skinny or fat. It can look like a tribal pattern that waves like a flag in a stiff breeze. It is circular shapes and occasionally rectangular ones with every color our eyes see. I sparkles like diamonds or shimmers.

And I am still in the occult phase.


Re: AZOOR



We want to thank Nikon for developing and marketing the SeeCoat Blue lense coating.

I contacted the department of virology at the university where I was diagnosed with AZOOR. I received no reply.

I contacted my local public health department regarding AZOOR and received no reply.


Re: AZOOR



Cynthia
also had my thyroid function tested after 6 weeks on not taking tyroxine and I'm fine have my dr's blessing to stay off it thyroid function within normal limits.. I will listen to my gp but for now on will always question if a medication is necessary. That with my new blue lenses I am a happy girl today :)

Jenny


Re: AZOOR



Cynthia

Thanks so much for telling us about the blue tint. I wore my new blue tinted glasses at work today and it's the first time I have felt productive at work since I have had AZOOR.

Thanks heaps

jenny


Re: AZOOR



Cynthia

Thanks so much for telling us about the blue tint. I wore my new blue tinted glasses at work today and it's the first time I have felt productive at work since I have had AZOOR.

Thanks heaps

jenny


Re: AZOOR



A disease is a condition that is marked by 3 basic factors.

1.An established biological cause behind the condition
2.A defined group of symptoms
3.Consistent change in anatomy due to the condition

A syndrome does not have any of these features. Even the symptoms that are present are usually not consistent, and definitely not traceable to a single cause.

The reason behind most syndromes has still not been identified. For this reason, they are a type of medical mystery. In contrast, the reason or cause behind a disease can be identified very easily.



Read more: Difference Between Syndrome and Disease | Difference Between | Syndrome vs Disease http://www.differencebetween.net/science/health/di...


Re: AZOOR



I am going to enjoy engaging my doctors about autologous stem cells and the not yet proven inflammatory aspect of AZOOR. I am going to learn a lot, too.


Re: AZOOR



Endophthalmitis is an inflammation of the internal coats of the eye. It is a possible complication of all intraocular surgeries, particularly cataract surgery, with possible loss of vision and the eye itself.

It certainly pays to talk to as many doctors as possible to find out about things. I did not know that even cataract surgery is something to be concerned about.

Thank you, program manager.


Re: AZOOR



Thank you so much got confirming what I suspected and my retina specialist advised me.


Re: AZOOR



For readers of this AZOOR string, we wanted you to know that VisionAware has reached out to a clinician who is a leading expert in retinal disease stem cell and he strongly discouraged people from trying this therapy, noting particular concerns about both the safety and efficacy of it. In addition the expert noted that "inflammatory diseases such as AZOOR are even more worrisome given the risk of inflammation even with autologous therapies. In the past, fat 'stem cell' injections have been known to result in endophthalmitis (inflammation of the internal coats of the eye)."


Re: AZOOR



Hi

Anyone seen this the main character is meant to have AZOOR but his symptoms are not right.

http://m.imdb.com/title/tt0187489/


Re: AZOOR



Anyway Jenny, it will be some time before I have enough information to even consider making a decision about the future.

That shouldn't hold anyone back if now is the right time for them.


Re: AZOOR



I don't know if my having had radiation would have affected anything. My hair has never completely grown back and never will, for example.


Re: AZOOR



Jenny,

No, I haven't. I posted the information to make it available to everyone.

I am going to begin talking to my regular ophth about autologous stem cells this spring.

I am also scheduled for a bone density dexa scan on my every 2 year schedule. I am going to talk to that doctor about feasibility for me.


Re: AZOOR



Cynthia

Have you sent your information to the trial to see if you will be accepted?


Re: AZOOR



As for me, I am going to begin a discussion with my general ophth about autologous stem cell research and have him watching how things go. It might come to decision time at some point especially when my other eye goes. Researchers learn more and more every year. This is something that gets studied while AZOOR is rarely considered. I cannot do the powerful drugs so it is my only treatment option.


Re: AZOOR



Yes but no point in participating in a study that has dubious outcomes and put what vision I have at risk.

Maybe one day.


Re: AZOOR



Great that you're doing your homework, Jenny. It sure is a huge price to pay to have your hopes raised and then dashed. Don't feel pressured into taking part if you're not comfortable with it.
Best wishes for a relaxing holiday season. Lynley


Re: AZOOR



Hi Cynthia
I have been doing some reading and I am not sure about the trial, the results are promising but not permanent it seems to wear off and your back where you started in 12 months I cant afford to spend 30K Australian on something temporary.

Will keep doing my research but I am not so excited now.

Jenny


Re: AZOOR



When my neuro told me to be cavalier about AZOOR I wanted to throw a pie in his face. I guess I don't see the humor in it all. (Not that I cannot laugh at myself). The ever changing visual distortions are hard to deal with. But, my life goes on as do your lives go on. The new medical advancements are interesting to watch. Bye for now.


Re: AZOOR



A Case of Syphilitic Outer Retinitis Mimicking Acute Zonal Occult Outer Retinopathy

Jeong Ah Kim, Kyu Hyung Park and Se Joon Woo


Syphilis is a sexually transmitted, systemic infection with increasing prevalence. Ocular syphilis may develop at any stage of the disease process and can involve any ocular structure [1]. Ocular syphilis mimics any type of inflammatory process without pathognomonic manifestations and often leads to misdiagnosis, resulting in permanent vision loss [1,2]. Syphilitic uveitis involving the posterior segment has been reported as several conditions [1]; however, to our knowledge, no previous study describing syphilitic outer retinitis has examined the condition by spectral-domain optical coherence tomography (SD-OCT). Herein, we report a case of syphilitic outer retinopathy, mimicking acute zonal occult outer retinopathy (AZOOR).


Re: AZOOR



If light sensitivity becomes unbearable, try wearing welder's goggles for some relief.


Re: AZOOR



Enjoy Cynthia,

We leave on a Flight to Auckland on Thursday really enjoying the break from the day to day 9 days away is just what the Dr ordered.

Jenny


Re: AZOOR



BTW, I am enjoying my sense of smell and my sense of taste. Friday is a big shopping day in the US. I plan on a fun Holiday Season.


Re: AZOOR



No definitive test

Currently, there is no definitive test that can distinguish autoimmune retinopathy from other retinal degenerative diagnoses such as acute zonal occult outer retinopathy (AZOOR), retinitis pigmentosa, cone dystrophy, Vitamin A deficiency and toxic retinopathy (chloroquine, hydroxychloroquine). For each suspected case of an autoimmune retinopathy, the clinician will continue to need to use all the clinical and laboratory data available to them to make the correct diagnosis.


Identifying patients with autoimmune retinopathy
June 01, 2013 By Dr Kathryn L. Pepple PhD, Dr Prithvi Mruthyunjaya


Re: AZOOR



Jenny,

You know that whatever you decide about AZOOR next year--WE ALL UNDERSTAND.


Re: AZOOR



Thanks Cynthia
I am giving the natural way a go until January at least until I see the specialist again and will get bloods done again then.

I don't plan to see my go now hopefully I will surprise him with my health next time I see him. I am seeing the naturopath weekly.

Jenny


Re: AZOOR



Jenny,

Just remember that if you need to go back on - You Have Options. Definitely try another brand. How they differ is that they each use a slightly different set of fillers. Try a lower dose for a time and work closely with your doctor.

That red wine sounds good!

Cynthia


Re: AZOOR



Thanks Cynthia

Went a naturopath today he agrees with my decision to come off thyroxine and I am now taking lots of lots of herbal medicine and I am not allowed to have caffeine, so will be discovering herbal teas. Interesting to see how it goes.
Thankfully I can still have a glass of two of red wine on the weekend. :)
Jenny


Re: AZOOR



Jenny,

Thyroid hormone controls the eye‘s visual pigments throughout life
Date:
March 30, 2011
Source:
Max-Planck-Gesellschaft
Summary:
What part does the thyroid gland have in vision? Thyroid hormone is crucially involved in controlling which visual pigment is produced in the cones.

I did ask my professor neuro if he thought that the thyroid replacement might have to be reformulated. He didn't answer. I guess it is the rare thing again.


Re: AZOOR



I am amazed that doctors encourage people to grow their own stem cells and yet cannot agree on antiretinal antibodies' testing criteria? What is with that!


Re: AZOOR



The diagnosis of autoimmune retinopathy remains challenging, partly due to lack of consensus regarding diagnostic criteria. Basic science experiments have revealed autoimmune retinopathy to be an antibody-mediated disease. The general requirement for diagnosing autoimmune retinopathy is clinical evidence of retinal degeneration in the presence of serum antiretinal antibodies (ARAs). Some laboratories are now offering ARA testing to outside institutions, and in some cases, this is offered as a commercial service.1,2 Antiretinal antibody testing is commonly performed using 1 or more techniques: Western blot, immunohistochemistry, and enzyme-linked immunosorbent assay. Antiretinal antibody testing could potentially have an important role in the diagnosis of autoimmune retinopathy. However, several hurdles and uncertainties should be overcome before this testing can truly become clinically reliable.


Full content is available to subscribers
Subscribe/Learn More Next Article >
Viewpoint | July 2015
The Uncertainty Regarding Antiretinal Antibodies
Farzin Forooghian, MD, MSc, FRCSC1,2


Re: AZOOR



Jenny,

I understand completely. I still remember my endocrinologist telling me that I could go home and think about things a bit longer even though my TSH was <.01


Re: AZOOR



Hi Cynrthia
I had my immune system checked it was a little out but nothing of concern.
last year since starting on thyroxine I had the worst year ever with infections so I really don't think my body likes the stuff


Re: AZOOR



Just a general comment.

I have not had a blood draw checking for autoantibodies.

I wonder if any of you have had a blood draw checking for autoantibodies.

One would think that especially before prednisone etc. that a blood draw looking for autoantibodies would be in order.

I think it is up to us to demand one if we are going the prednisone etc route.


Re: AZOOR



Jenny,

Remember also that we don't know if AZOOR has anything to do with autoimmunity. That is part of the ugly difficulty of not knowing whether or not a doctor is any good.

Dr Adamas' work explains the situation very well.

I understand that you are working through your experience with AZOOR. I think you are doing so well with it. Like Lynley has said, scream and yell if you have to.


Re: AZOOR



Jenny,

Just to help you sort things out a bit- The number on your blood work is called TSH for thyroid stimulating hormone. Have a look at that and see where it lands in the normal range. Is that number close to the highest of the normal range? The thyroxine dose also depends on your weight. Older people often are a bit lacking in thyroid production.

It seems a bit unusual to give a dose on one blood test without the patient having obvious symptoms. I'm half a world away, but you should have been scheduled for regular blood draws to check the level. It takes about 13 days or so for the drug to have a big effect and 3 months for full effect.


Re: AZOOR



I just rang the pharmacist

First time I received a prescription for Thyroxine was 3 June 14
I went to optometrist with the flashing lights in my eyes 23 June 14
Was put on meds for "optical migraines" on * 8 july as that is what my Dr thought the flashing lights were even though I had no pain and no history of migraines.

Will be discussing with my new GP but I am a little angry atm. I am not a Dr but to me the thyroxine has upset my immune system big time.

Jenny


Re: AZOOR



Jenny,

I'm glad. That is another problem you don't need.


Re: AZOOR



Thanks Cynthia
was never referred to an endocrinologist this was all a GP only that put me on thyroxin my daughter is a Podiatrist and it was her that strongly asked me to go off it, I have never been lethargic or any of the other symptoms so I have nothing to fear going off the thyroxin. It was just a marker in a blood test.

Jenny


Re: AZOOR



I think it is very important to have a good working relationship with your doctor(s). I understand why you lost confidence in your now former gp.


Re: AZOOR



No formal dignosis my thyroid just showed as a little under active in blood tests I never had any symptoms my gp put me on thyroxine the same gp that put me on migraine meds for the flashing lights .
I am on a very low dose and I am seeing a new gp I will let him know and watch for symptoms..


Re: AZOOR



No formal dignosis my thyroid just showed as a little under active in blood tests I never had any symptoms my gp put me on thyroxine the same gp that put me on migraine meds for the flashing lights .
I am on a very low dose and I am seeing a new gp I will let him know and watch for symptoms..


Re: AZOOR



I know how you feel, Jenny. The doctors don't know and they hedge what little they do know. They are in a protective mode.

So, you doubt that they know about anything.

Thyroid stabilization is a real art between doctor and patient.

Maybe you would feel better on a lower dose. Please reconsider stopping the thyroxine altogether.

I know you are thinking about your blood pressure also. Too low of a blood pressure will give you fainting and dizziness.

Thyroid stabilization is very serious business. The thyroid is involved in every function of our bodies.


Re: AZOOR



Jenny,

Do you officially have Hashimoto's Thyroiditis? (Underactive thyroid) My Graves' started years before the AZOOR. Be carefull about your decision of the thyroxine. There are problems if you have too much or too little. I actually talked to my professor neuro ophthalmologist about my thyroid.

He and I discussed mouse models-you know, little white mice that they test eye stuff on. There is a relationship between the thyroid and the retina. I strongly suggest that you talk to your endocrinologist and your neuro before you change anything. You might make the situation worse.

Remember the symptoms that put you on the 50mcg. The fatigue- do you really, really want to go to bed all day long?

When I feel down, this is what I think about. I worked with a girl whose husband and best friend ran off and eventually married. She survived it all. My sister had a blood transfusion in 1985 and got hepatitis C from it. She is still a bitter and angry person.

What do you want to be, Jenny?


Re: AZOOR



Hi Cynthia

Did your Azoor symptoms start after starting thyroxine?
I was put on a low dosage(50) due to an underactive thyroid which only showed in blood test no other symptoms in March 2014 - two months before my symptoms started.
I am going to stop taking it, I am only on a low dose so I don't think I will not have any side effects if I do will talk to GP.
But its the only thing that changed just before getting the flashing in the eyes, and the thyroid is linked to our immune system so its worth a go.
I hadn't thought of it until you mentioned that you take it.
My immune system just might not like it.


I see my GP in a week so I will tell him what I am doing but I am determine to try it for a couple of months.

thanks again for all your posts.

Jenny


Re: AZOOR



Jenny,

Your decisions regarding azoor are not outside the bell curve. How did I come to a decision about Graves? My heartbeat was irregular. I would go to sleep at night and wonder if I would wake up in the morning. Some days I still wish I had just toughed it out longer because of the endless ramifications (another story). Don't doubt yourself.


Re: AZOOR



It isn't easy to see that Dr. Adamus identified the cells to check for any AZOOR autoimmunity 4 YEARS AGO. All I can say is that I've been dead ever since I had the radiation for Graves'. If I don't take the thyroxine, I will go into a coma and die in a couple of days.


Re: AZOOR



Jenny,

It isn't easy to see and watch doctors floundering. We are weak in our difficulties and they are weak and uncertain but trying to be knowledgeable.


Re: AZOOR



I agree with Lynley that doctors really want to help us. Sometimes, we have to help them and guide them in the direction we want to go. We have to be the "grown-ups".


Re: AZOOR



Thanks, Jenny.

I understand that I have tired you out and I'm sorry.

I guess I want to show how hard it is for a patient to understand this condition.

I also want to share my understanding of things as best I can. This especially for the younger people who have not been ill before and have never seen this ugly face of the medical profession.

You are a good friend.


Re: AZOOR



Cynthia

I find the more I read the less I understand, and it drmonstrates the medical profession truly don't understand AZOOR either.

I must admit I haven't been able to read your posts completely as I just can't read that much anymore but thanks for sharing.

Take care

jenny


Re: AZOOR



So, if we find out what KIND of disease we have, will we ask for more and more and more....? I don't know. But, I do know that for me, "just go home and drink the KOOL AID" won't work!


Re: AZOOR



The challenge is to understand regulatory mechanisms that induce autoimmunity against retinal antigens in AZOOR, and show that these autoantibodies are involved in zonal destruction of the retinal cells like in other autoimmune retinopathies

This is the key to future study of AZOOR. When we have these cells, are they the destroyers of our photoreceptors, rpe and choroid or not.


Re: AZOOR



Female with autoantibodies 18 - 47% Male with autoantibodies 10 - 66%

The focus of my laboratory is on the autoimmunity of retinopathy, including cancer-associated retinopathy, melanoma-associated retinopathy, autoimmune retinopathy, and occasionally, AZOOR. I am often asked whether AZOOR is an autoimmune disease and whether this condition is associated with the presence of autoantibodies against retinal antigens. If so, do the autoantibodies play a role in pathogenicity of AZOOR? If one suspects an immunological or autoimmune involvement one should look for signs of inflammatory or autoimmune pathology as a result of failure in the mechanism of antigen-specific immunoregulation, typical of such diseases. AZOOR is a relatively new entity and has not been intensively studied. Two recent reviews suggested that AZOOR is a form of AR [4,5].
In 2003, Jampol and Backer proposed a hypothesis that AZOOR may originated from relatively common non-disease specific of “clusters” genes (at specific genetic loci) that predispose individuals to “autoimmune” diseases in a similar way to other inflammatory diseases of unknown etiology [6]. However, there is no strong evidence supporting this hypothesis. A history of AZOOR-associated immune-mediated inflammatory systemic disease was reported in only ~18% of patients [5]. Treatments with systemic corticosteroids and other systemic immunosuppressive agents have not been effective [5]. However, Grass et al. [1] reported inflammationthat typically develop within several weeks following the onset of AZOOR, possible as an effect of an inflammatory response to the dying photoreceptor cells. Occasionally, weeks or months later, narrowing of the retinal vessels, particularly the retinal arteries, perivascular sheathing and reactive changes in the RPE occur, including hypopigmentation and migration of RPE into the overlying retina similar to that occurring in the zones of receptor cell loss in RP. In such cases one would expect a generation of autoantibodies against components of these retinal cells.

Is Zonal Occult Outer Retinopathy an Autoimmune Disease?
Grazyna Adamus
Ocular Immunology Laboratory, Casey Eye Institute, School of Medicine, Oregon Health & Science University, Portland, OR, USA


Re: AZOOR



Over last 10 years we have tested 53 patients diagnosed or suspected of AZOOR for anti-retinal autoantibodies. Table 1 summarizes the demographics of findings at the time of blood collection for anti- retinal autoantibody testing. Twelve patients had evidence of unilateral involvement at the time of antibody testing and the course was
progressive in 14 reported cases. Depressed ERG was reported in 33 patients. Remarkably, more than a half of patients tested (52.8%) had circulating autoantibodies to various retinal proteins but the range of autoantibody specificity was relatively narrow. Anti-a-enolase autoantibodies occurred in fourteen patients (~27%), in seven as a singular anti-retinal autoantibody.
Nine patients had autoantibodies against carbonic anhydrase II (CAII). Those autoantibodies are often associated with paraneoplastic and autoimmune retinopathies[7]. Autoantibodies of fifteen patients (~29%) recognized a single retinal antigen. Multiple autoantibodies were detected in 11 patients (21%), including anti-a-enolase, anti-CAII, anti-aldolase, anti-transducin and others, indicating a general activation of the immune system. In our cohort only two patients presented with inflammatory conditions (chronic uveitis and toxoplasmosis) that could contribute to the generation of autoantibodies. Those multiple autoantibodies represented extremely similar range of antigenic recognition. Although those antigens are components of retinal cells and they play important physiological functions the only antigen specifically related to photoreceptor cells was photoreceptor transducin a and ß. One would argue that such autoantibodies are nonspecific to retinal degenerative disease therefore are not pathogenic.

The incidence of autoantibody in AZOOR is high, much higher than in our control group of healthy subjects. It is known that autoantibodies are present in healthy individuals, usually in very low levels, indicating that these autoantibodies are not pathogenicas the levels are too low to rise to symptoms if the antigen is not preset, and they even may be protective. Depending on specificity, anti-retinal autoantibodies were found in 0-11% of normal subjects in our studies. Interestingly, in systemic diseases, about 25% of healthy relatives of SLE patients present with serum anti-DNA antibodies [8]. This would imply that, in some cases, pathogenicity of autoantibodies might depend on correct exposure of the autoantigen.
The presence of anti-retinal autoantibodies indicates an immunological involvement. The challenge is to understand regulatory mechanisms that induce autoimmunity against retinal antigens in AZOOR, and show that theseautoantibodies are involved in zonal destruction of the retinal cells like in other autoimmune retinopathies [9]. This will lead us to better understanding of pathogenicity of AZOOR and development of new immunotherapies for management of disease.



Corresponding author: Grazyna Adamus, Ph.D., Oregon Health and ScienceUniversity, Casey Eye Institute, 3181 SW Sam Jackson Park Rd., Portland, OR97239, USA, Tel: 503-418-2540; Fax: 503-418-2541; E-mail: adamusg@ohsu. edu
Received August 10, 2011; Accepted August 25, 2011; Published September 05, 2011
Citation: Adamus G (2011) Is Zonal Occult Outer Retinopathy an Autoimmune Disease? J Clinic Experiment Ophthalmol 2:104e. doi:10.4172/2155- 9570.1000104e


Re: AZOOR



I guess the bottom line is that WE have to teach the doctors about AZOOR. I know that Lynley has emphasized the importance of regular eye doctor visits. Please go in, even if nothing else is going on with your eyes. For me, the choice is easy. I don't want to lose the rest of my vision to glaucoma. I would rather AZOOR took it.


Re: AZOOR



trizonal pattern of sequential involvement of the outer retina, retinal pigment epithelium, and choroid.

Choroid
From Wikipedia, the free encyclopedia


The human choroid is thickest at the far extreme rear of the eye (at 0.2 mm), while in the outlying areas it narrows to 0.1 mm.[1] The choroid provides oxygen and nourishment to the outer layers of the retina.

There are two circulations of the eye: the retinal (in the retina) and uveal, supplied by posterior arteries, originating from the ophthalmic artery. The arteries of the uveal circulation, supplying the uvea and outer layers of the retina, are branches of the ophthalmic artery and enter the eyeball without passing with the optic nerve.

(The retinal circulation, on the other hand, derives its circulation from the central retinal artery, also a branch of the ophthalmic artery, but passing in conjunction with the optic nerve). The macula responsible for central vision and the anterior part of the optic nerve are dependent on choroidal blood supply.[3




Simple Anatomy of the Retina by Helga Kolb

The outer nuclear layer (ONL), composed of the cell bodies of the rods and cones.


So, there is disruption, chaos in both of our eye circulatory systems--on each side of the rpe. (No wonder our photopsia is so wild).


Re: AZOOR



The knowledge that the RPE is able to interact with the immune system has gained an increasing interest lately. Many types of retinal degeneration seem to be associated with an insufficiency to silence the immune reactions, for example, in age-related macular degeneration (See chapter by Hageman et al. webvision). On the other hand, an understanding of the immune privilege of the RPE is going to be helpful in the treatment of retinal degenerations by injected peptides, gene-therapy via viruses or in approaches using transplantation.

The author

Olaf Strauss is a Berliner, educated in Berlin until receiving his doctorate in Zoology and Physiology in 1990 and the habilitation in 1999 from the Berlin Freie University. After five years as a professor in Experimental Ophthalmology, UKE, Hamburg, he took up a position in Experimental Ophthalmology at the University Hospital, Regensburg. He is presently Professor in Experimental Ophthalmology at the University of Regensburg. His research interests have always been on understanding the function of the retinal pigment epithelium


Re: AZOOR



The 3 types of AZOOR when we are diagnosed:

Type 1: AZOOR appears with another of the Azoor Complex also known as
The White Spot Syndromes

Type 2: AZOOR can be easily seen

Type 3: AZOOR cannot be easily seen

Rate of progression: Highly variable

Age range at onset: Teen years to 80+ years

Female to male ratio: 2.5 to 1

Population: Asian and Caucasian


Re: AZOOR



Jenny,

Please let us know how it goes with you and Vision Australia.


Re: AZOOR



I like that. We are the 'miscellaneous' file.

What intrigues me most along the cousins of RP thought is the fact that AZOOR affects Asians and Caucasians only.


Re: AZOOR



What I have been told is its a "syndrome" so its not really an exact disease and that would explain the differences in our symptoms, I take that they have essentially ruled out other things and cluster us together under AZOOR.

Lynely you articulate things so well, thank you again.


Re: AZOOR



Thank you for not scolding me, Lynley. I watch my general ophth when I see him for my glaucoma and because he is young, he just cringes. I try to go easy on him. I respect the education that he has and think of him as my age being a good doctor with a ton of experience. Dr. Jampol is not young and he should hear a bit of sarcasm. I agree that white spot is better than AZOOR complex. But come on. More name changes? AZOOR has no white spots. Anyway, I have found some orange light bulbs that have a reduced blue light. Some places in my house used to give me glare-outs at night. Now, it is better--except for the bathrooms--which I am still thinking about.


Re: AZOOR



Cynthia - Accurate diagnoses and effective treatment is what we expect of doctors and what they expect of themselves, so when medical science doesn't have all the answers it can be extremely frustrating for doctors and patients alike, especially when horrible diseases like azoor leave us feeling so frightened, anxious and vulnerable. But doctors have a duty not to promise more than medical science can deliver. That's why we trust them - we know their diagnoses and treatments are based on good evidence, and not just on passing hunches or a wild guesses.
As I understand it, the medical literature shows that some people with azoor have auto-immune diseases and some have viral or yeast infections but no causal link between these diseases and azoor has been established. Any doctor who claimed such a link would be guilty of what psychologists call 'confirmation bias'. Besides, most people with azoor have nothing else wrong with them. So, sorry, there are no answers - just the need to live with uncertainty, and to do whatever it takes to find a little joy among the dark clouds of worry.


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Cynthia my Retina surgeon told me its very similar to Retina pigmentosa I must ask him what is the difference next time I see him.


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We have hypothesized
We have not done this study to date
It seems likely
It seems quite possible
These are probably
Because of the similarity of these demographic factors

White-Spot Syndromes of the Retina
Lee Jampol, M.D.
Chicago, IL


Re: AZOOR



I know that this is pure speculation on my part but I think AZOOR is a cousin of RP. Look at hemophilia for example. More males have it than females and it can skip generations. Why don't they think of it as autoimmune?


Re: AZOOR



You are most certainly facing many tough decisions right now. My heart goes out to you. I have sourced out a low vision specialist for when I need one. I am glad that I bought a special long term care old age medical insurance policy when I was younger.

With a rare disease, there is really nothing out there geared for the average patient. It took awhile getting used to the doctor jargon. I look things up all the time.

I think that the AZOOR research horse hasn't left the gate for a long while. I don't understand how doctors can go on for so many years without any sound footing. Sadly, I don't think that anything will change because AZOOR is rare. Too many of them will go on with what they think and not on with what they know. We patients have to become smarter than our doctors here.


Re: AZOOR



Yes I agree I tell people all the time we are all unique so no clue my long term outlook and i am getting better with the uncertainty. Most of these articles are not geared to the patient but the medical practitioners I think.
I have sent a request to vision Australia as I clearly need some guidance so I stop hurting myself and we are preparing our house for sale in the short term future to simplify our finances.
So taking control of what I have control of.

My foot is still swollen and black so cannot exercise to much but once it's better will be enjoying long walks again. :)


Re: AZOOR



Jenny,

I try to let the doctors do my talking for me. As for AZOOR, I still have it only in one eye. Jan 1, 2016 will be 2 full years for me. I do not think that one eye with this will continue forever. Because I have Graves' disease, I know the drill. My paternal grandmother had Graves's disease but, no other autoimmune disease is in my family other than Graves'.


Re: AZOOR



Jenny - you have to take any authoritative statement about azoor with a big grain of salt because the statement is nearly always a generalisation based on a very small number of subjects. Most people on this discussion board say that their azoor took much longer than 6 months to diagnose, and even then the diagnosis often has a question mark after it. Cynthia posted an article back in August that included this statement: "After reviewing more than 400 cases diagnosed or referred to us as AZOOR or AZOOR complex, we assembled 30 cases that fit our current definition." This indicates that there is a lot of uncertainty over the definition of azoor (I use lower case - don't want the disease to look too important). Even if your azoor fits the current definition of these researchers, their article is based on a small sample using one group’s definition, and for all we know that definition may have been modified since the article was written. And other articles written by other researchers may use a different definition of azoor. What happens with you is unique to you. I know that's a lonely place to be, but as part of the azoor family you are not alone. We are all struggling to live with uncertainty - which is not what we humans like doing. Let's face it, we're an explanation driven species! We want answers!! Oh, it is so frustrating!


Re: AZOOR



I'll take my cue from Lynley. I know she would say to ask your doctor about that. Here is more from Dr. Jampol's lecture:

We have hypothesized that these white-spot syndromes may represent autoimmune phenomena in the eyes. If we are correct, one would expect a higher incidence of autoimmune disease in families of patients with the white-spot syndromes. We have not done this study to date but on questioning several of these patients, it is apparent that they do come from autoimmune families. Because of this, we are
277
proposing a collection of data on patients and the first and second-degree relatives of patients with white-spot syndromes for familial hereditability studies. If this is productive, then familial studies looking for the genetic loci associated with white-spot syndromes can be done.

Here is his complete section on AZOOR:

AZOOR
Acute zonal occult outer retinopathy (AZOOR) occurs in young, healthy individuals who develop unilateral or bilateral areas of dysfunction of the peripheral outer retina. They may have photopsias along the margins of these scotomas. The retina in the area of involvement often appears normal initially. Even with evolution of the lesions, the retinal abnormalities are often subtle. There may be pigmentary mottling, which can be very mild but may eventually resemble segmental retinitis pigmentosa. Patients may have relapsing episodes of loss of vision in the peripheral retina of one or both eyes. Electroretino- gram is usually abnormal in the involved eyes. Patients may show recovery of visual function in this area, but in a few patients, relentless progression is seen with loss of peripheral vision. However, bilateral blindness is ex- tremely rare. Patients who develop segmental, episodic areas of loss of peripheral vision should be suspected of having AZOOR. A patient who has had multiple episodes may begin to resemble other diffuse photoreceptive dysfunctions such as retinitis pigmentosa, diffused unilateral subacute neuroretinitis, cancer associated retinopathy and other diffuse photoreceptor abnormali- ties.
Patients with AZOOR have been treated with corti- costeroids and antiviral drugs in hopes of affecting the course of AZOOR, but they do not seem to help. Fortu- nately, most cases stabilize after six months of activity and bilateral severe loss of vision is the exception in this condition. The fundus findings may be very impressive with large segmental areas of bone spicule pigmentation. There often are peripapillary pigmentary changes as well. These patients do not show the white dots of MEWDS or the punched out scars seen with multifocal choroiditis.


Re: AZOOR



I have bilateral severe loss :) I must be an exception
Is that 6 months from the onset?
Mine started May 2014 but flashing wasn't all day every day until July 15
When they say stablilise do they mean deterioration flashing either or
Or both ?


Re: AZOOR




Patients with AZOOR have been treated with corti- costeroids and antiviral drugs in hopes of affecting the course of AZOOR, but they do not seem to help. Fortu- nately, most cases stabilize after six months of activity and bilateral severe loss of vision is the exception in this condition. The fundus findings may be very impressive with large segmental areas of bone spicule pigmentation.

White-Spot Syndromes of the Retina
Lee Jampol, M.D.
Chicago, IL


Re: AZOOR



AZOOR also lands here.

Pseudoretinitis Pigmentosa: Conditions Mimicking RP

The causes of pseudoretinitis pigmentosa, based on etiology, include:

infection, eg, congenital rubella, syphilis, Lyme disease;
inflammation, eg, retinal vasculitis, old posterior uveitis;
autoimmunity, eg, autoimmune retinopathy, cancer-associated retinopathy, acute zonal occult outer retinopathy (AZOOR);
trauma, eg, intraocular foreign bodies, such as siderosis, or blunt trauma, such as severe commotion retinae; and
drug toxicity, eg, to chloroquine/hydroxychloro-quine, phenothiazides, or thioridazine.

Understanding Retinitis Pigmentosa

Diagnosis and treatment of this genetic cause of photoreceptor degeneration

HUY V. NGUYEN, BA • THARIKARN SUJIRAKUL, MD • NINA KULKARNI • STEPHEN H. TSANG, MD, PhD


Re: AZOOR



I also reaffirm my personal opinion that not one person should use immune surpressants until AZOOR is PROVEN to be an autoimmune disease.


Re: AZOOR



Sometimes I feel trapped by the spotty interest in AZOOR research. I don't know what we would do without you here at Vision Aware. Expanding the view on autoimmune disease will hopefully affirm many of the things we talk about here.


Re: AZOOR



If we only knew for certain about AZOOR.

Autoimmune Disease in Women
Autoimmunity: A Major Women’s Health Issue

The Facts

Named a major women’s health issue by the Office of Research on Women’s Health at the National Institutes of Health (NIH), autoimmunity is the underlying cause of more than 100 serious, chronic illnesses. OF the 50 million Americans living and coping with autoimmune disease (AD), more than 75 percent of them are women.

The term “autoimmune disease” refers to a varied group of illnesses that involve almost every human organ system. It includes diseases of the nervous, gastrointestinal, and endocrine systems, as well as skin and other connective tissues, eyes, blood and blood vessels. In all of these ADs, the underlying problem is “autoimmunity” – the body’s immune system becomes misdirected and attacks the very organs it was designed to protect.

Autoimmunity is a Disease Category

Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin’s lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that ADs are responsible for more that $100 billion in direct health care costs annually.

Table I
Female:Male Ratios
in Autoimmune Diseases
Hashimoto’s thyroiditis 10:1
Systemic lupus erythematosus 9:1
Sjogren’s syndrome 9:1
Antiphospholipid syndrome-secondary 9:1
Primary biliary cirrhosis 9:1
Autoimmune hepatitis 8:1
Graves’ disease 7:1
Scleroderma 3:1
Rheumatoid arthritis 2.5:1
Antiphospholipid syndrome-primary 2:1
Autoimmune thrombocytopenic purpura (ITP) 2:1
Multiple sclerosis 2:1
Myasthenia gravis 2:1
Autoimmunity and Women

Taken together, autoimmune diseases strike women three times more than men. Some diseases have an even higher incidence in women. Autoimmune diseases have been cited in the top ten leading causes of all deaths among U.S. women age 65 and younger.1 Moreover, these diseases represent the fourth largest cause of disability among women in the United States.2

The fact that women have enhanced immune systems compared to men increases women’s resistance to many types of infection, but also makes them more susceptible to ADs.

In addition, women who have an autoimmune disease have suffered from a lack of focus and a scattered research approach. For example, autoimmunity is known to have a genetic basis and tends to cluster in families as different autoimmune diseases — a mother may have lupus; her daughter, juvenile diabetes and Hashimoto’s thyroiditis; her sister, Graves’ disease; and her grandmother, rheumatoid arthritis.

Different ethnic groups are more susceptible to certain autoimmune diseases. In lupus, for example, African-American, Hispanic, Asian and Native American women are two to three times more likely to develop the disease than Caucasian women.3 And 9 out of 10 people who have lupus are women.4

In 2013, two epidemiological studies published in the online edition of the journal, Arthritis and Rheumatism, confirmed this long-held belief by the American Autoimmune Related Diseases Association, Inc. (AARDA) and many others in the autoimmune disease community – that Systemic Lupus Erythematosus (SLE or lupus) disproportionately affects young African-American women. However , these studies revealed the incidence rate is far greater and impacts these women at a much earlier age than previously thought.

The two studies from National Lupus Registries in Georgia and Michigan are from the largest and most far-reaching epidemiology study ever conducted on lupus. An extensive review of records from hospitals, specialists’ offices and clinical laboratories within Georgia and Michigan showed African-American females developed lupus at a younger age than white females.

Getting an Autoimmune Disease Diagnosis

Since the women affected are mostly young women in their childbearing years, a time when they are traditionally most healthy, getting a diagnosis can prove to be extremely difficult. Symptoms vary widely, notably from one illness to another and even within the same disease. And because the diseases affect multiple body systems, their symptoms are often misleading, which hinders accurate diagnosis.

According to a survey by the Autoimmune Diseases Association, over 45 percent of patients with autoimmune diseases have been labeled chronic complainers in the earliest stages of their illness. In addition, another AARDA survey found that it takes most autoimmune patients up to 4.6 years and nearly 5 doctors before receiving a proper autoimmune disease diagnosis.

Despite these statistics, autoimmune diseases remain among the most poorly understood and poorly recognized of any category of illness. Individual diseases range from the benign to the severe. To help women live longer and healthier lives, a better understanding of these diseases is needed, as well as better, more effective methods of diagnosis and treatment.

What Can Be Done?

As the nation’s only organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women’s health issue, AARDA is working hard on several fronts to raise awareness, including:

1. Recognizing autoimmunity as a “category” of disease. If the public and medical practitioners were more aware of the genetic predisposition to develop autoimmune disease, clearly there would be more emphasis on taking a medical history regarding autoimmune diseases within the family when presented by a patient with confusing symptoms. Young women, especially, are often not taken seriously when they first begin consulting their ndoctors for their vague symptoms and are often shunted from specialist to specialist.

2. Increasing public education about autoimmunity and autoimmune disease. Every five years, AARDA conducts a national public opinion poll gauging Americans awareness of AD. The latest survey (2013) indicates greater awareness is still sorely needed. The good news is that over the last decade, Americans’ ability to name and AD has jumped by nearly 10 percent. The bad news, though, is that overall less than one in five Americans — or 15 percent — can name an AD.

3. Creating Autoimmune Diagnostic Triage Clinics or Autoimmune Centers of Excellence. These types of centers are one of the best answers to the critical need for early diagnosis which may prevent significant and lifelong health problems. These clinics would allow patients, whose symptoms are confounding their own physician, to see various medical specialists at one time, rather than going from doctor to doctor over the course of months or years.

4. Facilitating more collaboration and cross fertilization of basic autoimmune research. Research that focuses on the etiology of all autoimmune related diseases will bring us to the root causes of these diseases rather than the superficial level of treating the symptoms after the disease has had its destructive effects.

1. Walsh, SJ, LM. Autoimmune Diseases: A Leading Cause of Death among Young and Middle-Aged Women in the United States. American Journal of Public Health. 2000;90:1463-1465

2. U.S. Department of Health and Human Services. Office on Women’s Health. Women’s Health Issues: An Overview. Fact sheet. May 2000.

3. Society for Women’s Health Research and the National Women’s Health Resource Center, Inc. Autoimmune Diseases in Women.2002.

4. National Women’s Health Information Center. U.S. Department of Health and Human Services, Office on Women’s Health. WomensHealth.gov/fa


Re: AZOOR



Thanks everyone my bruise on my right foot continues to expose itself but the swelling and pain is going down.

Like Nicole I have to stop doing things on auto as clearly I can't anymore.

Have my report ready to meet my work medical appointment tomorrow.

Wish me luck


Re: AZOOR



I forgot to add that I have read elsewhere that everyone has antibodies against the retina. We just might have some different types or more of one type than healthy people have.


Re: AZOOR



It's great to have a supportive community, and understanding folk we can sound off to when things aren't going right. Hope your bruises are fading, Jenny. It sure is frustrating to have to be ultra careful all the time. And it's easy to get overconfident when we're doing okay - but then we get caught out by bad lighting, or our eyes misbehaving more than usual - ouch!


Re: AZOOR



Btw I hope your foot gets better! Sorry you have to go through all of this!!


Re: AZOOR



Hi Jenny,

I've had this for over 10 years and till today I still bang into things/people, trip over things and also get bruises on my arms legs even on my head. You'd think I'd be better at it or maybe I need to be alot more cautious. I guess sometimes I just get caught up in doing something how i normally would and forget about my surroundings.


Re: AZOOR



Hello All
will I ever remember my limitations and stop hurting myself
Last Friday a container full of frozen spagetti fell out of the freezer onto my foot which immediately swelled up like and egg the swelling is going down and now the bruising is coming out I have a lovely black foot.
Then yesterday stubbed my toe on the corner of bed so my other foot has s lovely bruise not to mention the bruises I have on legs and hips from walking into things in general.
Life is certainly different with AZOOR

jenny


Re: AZOOR



gb30 Thank you for your posts. I as so many struggle to explain this condition to my loved ones. I read your posts to my husband this am and said, "Listen to this, is as if I was working this". I met your post with a level of empathy like no other. We just received confirmation that I do indeed have AZOOR in both eyes after just getting used to having it in one. Though the pain, uncertainty, changes, vision loss etc are difficult to get used to I struggle more for those around me that don't understand, can't see this but hurt for me, want to fix it and try to understand something they don't. I've been able to have more confidence, find the words or descriptions I'm looking for through this board. I'm forever grateful!! No there's no cure for AZOOR, no we doctors etc don't understand it, yes it's different for so many and often changes. NO we are not alone!!!! YES sometimes else knows what we are going through!!! YES we will get through this, it may be difficult as our routes keep changing, but YES we have a healthy supportive place to turn to for comfort!!! Thank you ALL for posting, it's so important!


Re: AZOOR



gb30 Thank you for your posts. I as so many struggle to explain this condition to my loved ones. I read your posts to my husband this am and said, "Listen to this, is as if I was working this". I met your post with a level of empathy like no other. We just received confirmation that I do indeed have AZOOR in both eyes after just getting used to having it in one. Though the pain, uncertainty, changes, vision loss etc are difficult to get used to I struggle more for those around me that don't understand, can't see this but hurt for me, want to fix it and try to understand something they don't. I've been able to have more confidence, find the words or descriptions I'm looking for through this board. I'm forever grateful!! No there's no cure for AZOOR, no we doctors etc don't understand it, yes it's different for so many and often changes. NO we are not alone!!!! YES sometimes else knows what we are going through!!! YES we will get through this, it may be difficult as our routes keep changing, but YES we have a healthy supportive place to turn to for comfort!!! Thank you ALL for posting, it's so important!


Re: AZOOR



We want to thank you researchers for taking the time to look into AZOOR. Please continue. We know that there are not many of us. But, this disease is so hard. I, for one, keep experimenting with light bulbs to see what has the most compatible glare for me. I wear antiglare glasses until I get skin problems under my eyes. Then, I have to brave the indoors without any glasses to heal. I cannot go outside without sunglasses or I pay a price for a few days. My eyes become twice as sensitive to glare! My photopsia has not gone away. It has only lessened. I understand that finding out that if
this is autoimmune or genetic does not solve anything. But, just knowing what is going on would be a great psychological help. Thank you for listening.


Re: AZOOR



Also, these researchers still don't know what causes AZOOR. They looked at the molecular level for a trigger and couldn't find one.


Re: AZOOR



Jenny,

It tells us that they still don't know what AZOOR is. But, they are pursuing the autoimmune theory at the molecular level and have found a list of cell types to study.


Re: AZOOR



Cynthia what is that post telling us ?


Re: AZOOR



Jpn J Ophthalmol. 2014 Nov;58(6):462-72. doi: 10.1007/s10384-014-0347-z. Epub 2014 Oct 1.

Autologous antibodies to outer retina in acute zonal occult outer retinopathy.

Tagami M1, Matsumiya W, Imai H, Kusuhara S, Honda S, Azumi A.

Western blot analysis using patient serum samples revealed some possible candidate antigens. Mass spectrometry could not determine the causative antigen; however, a list of candidates was discovered.

CONCLUSION:
We determined that AZOOR could be an autoimmune disease. All AZOOR patients tested using molecular biological methods had antiretinal antigens.


Re: AZOOR



I would go as far as to say that this coating is the first practical, easy thing that I have come across to help with any aspect of this multifaceted, terrible disease.


Re: AZOOR



Great I will talk to my optometrist about them thanks.

I saw my retina specialist yesterday and I can fly yay :)
Have also started the process of retiring on invalidity It's a long process hopefully will have answer by xmas.


Re: AZOOR



A few comments on the Nikon SeeCoat Blue premium. I find a noticeable improvement in the amount of glare that I can tolerate. It was applied to the inside of my sunglasses and to the outside of my clear glasses. The clear glasses can look a bit blue in certain situations. I don't mind that. It makes me look mysterious.


Re: AZOOR



Yes! decluttering is a work in progress for me, even though it's high on my list of "things to do while I can still see to do them". I'm amazed at how easy it is to accumulate stuff, and how hard it is to get rid of it.


Re: AZOOR



Hi Cynthia
Let me know how you go with the new lenses.
I have been using my time off wisely and de cluttering and selling excess household items it's quite fun and the extra money is handy with me not working.

jenny


Re: AZOOR



Jenny,
And, thanks to you. I would not have found a new lens coating by Nikon without your inputs. It filters out up to 35% of blue light. I just moved a couple of my glasses up to 250 from 225 and I decided to try it out.


Re: AZOOR



Jenny,
That's OK. Remember, you are at a place where everyone understands. I thought it was rather sweet when my general ophth told me that he would never forget me - Ever. (Even though I am still his patient). I have not always encountered such a humble doctor. AZOOR really rocked his world as well as mine.


Re: AZOOR



Sorry typo above
Should be
even typing this is challenging


Re: AZOOR



Sorry typo above
Should be
even typing this is challenging


Re: AZOOR



Very true Cynthia about doctors they are people first and with such a rare illness hard for them to pick if they have never seen it.
I now find it impossible to read for more then a few minutes my eyes. Start to ache and I get quite anxious because of missing words etc.

Still have flash backs and light bulb moments of mucking up recipes not doing well in testing for promotions when I would have creamed it in before I was blaming it on age but now I understand why.

I think I had been loosing my sight for over a year and just hadn't put the dots together.

I thought it was just at work but even touring this is challenging so I don't see me returning to my old role will be discussing options with my specialist next week.

jenny


Re: AZOOR



I find that my general ophth feels badly for how long it took to diagnose me etc. I hope he gets over it soon. I like all of my doctors to be real people and not just doctors.


Re: AZOOR



I am so grateful that Dr. Gass and others took to studying people like us. If we lived 100 years ago, we would all be in straight jackets.


Re: AZOOR



There are a couple of really interesting books on the subject of how people with healthy brains sometimes "see" things that aren't there: V.S. Ramachandran "Phantoms of the Brain", and Oliver Sacks "Hallucinations".


Re: AZOOR



I have read that the brain uses pulses that are electrical and chemical.


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Lynley,
Thank you. Yes, I like that explanation. I try to catagorize what I see so that I better understand and relax with it. Yes, a rough guess it is.


Re: AZOOR



Cynthia - I don't know whether this is the explanation or not, but sometimes when our eyes are malfunctioning the part of our brain (the visual cortex) that creates visual images from the information it gets from our eyes, doesn't get enough information, so it compares the inadequate information to stored visual memories and takes a rough guess - and in your case the rough guess was 'flat black circles'. But, like I said, i don't know whether that's the explanation for your experience, and if it is, I don't know what it's called.


Re: AZOOR



I have a different sort of question - comment. What to call what I describe as the optical illusions that we get with AZOOR. An example would be the following. I was cooking pasta on the stove the other night. As I was stirring the hollow noodles, some ends became flat black circles and a few of then were normal looking. That's not really photopsia. Would it just come under the flattening out of things?


Re: AZOOR



Thanks Lynley I will ask him we have a booked trip to NZ in December which is only 4 hours I'm sure that's fine.

saying to hubby last night we might have to start being more spontaneous with travel now and not book thinks so far in advance. We have a cruise booked for next September I am going to cancel while I can get deposit back and if it's available closer to date book again.


Re: AZOOR



Jenny, you'll need to ask your retinal specialist about long distance flying because everyone is different. I've flown long distances without any problems, but my azoor and your azoor may be very different.


Re: AZOOR



Does anyone know if flying long distance is okay with AZOOR?


Re: AZOOR



I have 2 other eye conditions. I have normal pressure glaucoma in my right eye only from an auto accident in 1969. I have meibomium gland dysfunction and it is worse in my left eye. Sometimes it is hard to tell if the occasional blurriness is from the AZOOR or the MGD. I do use the eyelid scrub and warm compress time of day as an excuse to take a short nap! I manage all of the eyedrops as just part of my day - just like using dental floss!


Re: AZOOR



I thought I'd replied this morning but must've pushed the wrong button. Just wanted to say that I get my exercise through walking and gardening. Suits me. I'm no longer driving so I use the buses a lot - and that means a lot more walking, which is pleasant. It also means crossing the road a lot more, which is a bit scary.


Re: AZOOR



Nicole and Jenny,

The gym I go to is in a room in my basement. I watched the sales at sporting goods stores for hand weights and bars. It's great. I go to my basement and throw in a load of laundry and pump iron!


Re: AZOOR



Nicole,
I can only imagine how you feel. I am lucky I still have strong central vision so using both eyes and be able to move my eyes saved me.
I really cannot read long documents though as how Lynley described it it doesn't make sense, I thought it was because of the flashing but reading what Lynley wrote was a light bulb moment for me, I have to move my head around the screen to read so naturally miss things.LOL and all my work is document or spread sheet based its just impossibly frustrating and I am done within a couple of hours.

I am going to make the most of time off to focus on getting well as best as AZOOR will allow.

Jenny


Re: AZOOR



Jenny,
I've had visiual field tests done a long time ago but unfortunately I wasn't so lucky and had to stop driving. I'm glad you are still able to drive. It is probably one of the hardest things for me to deal with because I always need someone to drive me everywhere and I'm not able to just pick up and go if I wanted to.

Cynthia,
Good job on the weights. I sometimes follow workout videos on YouTube on my smart TV since I can't go to the gym. Lol


Re: AZOOR



Jenny,

High blood pressure and I are old friends. I could go on and on. My doctor keeps my levothyroxine level as minimum as we dare go and I practice relaxation and so forth. It is an important thing to watch. Mine skyrocketed with the AZOOR as well. I'm a bit better now but not as low as I would like. I'm trying not to go back on the medication. I'm glad you are staying on top of it.


Re: AZOOR



Hi Cynthia
weights are great for your health we all should do some type of wright training well done.

I love that article written by Lynley she explains the challengers so well.
I had the visual fields test for driving yesterday and I'm still ok to drive.
My blood pressure was up and having real difficulties at work so on leave atm.
Go back to retina specialist in two weeks.

jenny


Re: AZOOR



My husband has owned his own business for 42 years. So, it was a natural for me to have a level of involvement there. I also dabble in the investment world of stocks and bonds as an individual retail investor. I enjoy the challenge of it. My husband hates investing, so I do all of it for us. I wish my overall health was better, but I am able to keep myself going and enjoy life.


Re: AZOOR



(Please Laugh) I still weight lift, just as I did before AZOOR. Yes, I lift weights for fun and for exercise. I only weigh 125 lbs!


Re: AZOOR



Becoming illiterate - Lynley Hood
www.lynleyhood.org/page8/page11/page11.html

This article is for all of you book lovers out there. It is an interesting observational by Lynley that should delight you and make you think.


Re: AZOOR



Jenny,

Ah, you proof read. That explains a lot of things. I think it is safe to say that all of us have had to slow way down - especially with reading and numbers.


Re: AZOOR



Hi
I saw the retina specialist yesterday, I need to have the visual fields test using both eyes to make sure its safe for me to drive, anyone had this?
Little concerned that he is concerned up to now I was told I could drive so xx fingers.

I also didn't realize you could be legally blind because of your peripheral vision loss but still have good central vision.

the ups and downs continue, it does explain why I struggle so much at work though and my proof reading is really bad.

Jenny


Re: AZOOR



AND (another frustration) - if we see something clearly, as we do when our eyes are calm and in the lighting is right, people think we're cheating!


Re: AZOOR



Lynley, that's the story of my life. I've been out a few times with mix and match so now I make sure I ask someone if my clothes and accessories match before I go out in public.

Jenny, I could tell you stories of so many times I've tripped over things on the floor, mostly my kids toys and bumped into walls, poles, doors, you name it and I've probably bumped into it. I'm glad your okay and wasn't seriously hurt.


Re: AZOOR



My colour vision loss is just in the pastel shades at the moment, but luckily I am a bright colours girl, I hope someone will point out to me that I am wearing wrong colours because the colour vision stuff does creep up on you I wasn't aware at all until I was tested.
Nicole you got this thing so young its a frustrating illness to have, especially being so rare and sometimes I think people think I am a nutter :) but its probably me being paranoid because people cant see what I see.
My eyes impact more then I like to admit I think, the other day I was so excited to see a Kookaburra (beautiful native bird) in our front tree I went out the door forgetting about the step had a lovely fall, now have a heavily bruised toe.. LOL, glad the neighbours didn't see me and the kookaburra had the decency not to laugh :)


Re: AZOOR



Jenny - there may not be anyone at Vision Australia who knows about azoor, but it's not just people with azoor who have problems with fluorescent lights. How about phoning or emailing Vision Australia and asking them who would be the best person to help you find the sort of non-fluorescent lighting that works best for you?
I've just downloaded the f.lux app. It looks really useful.
Nicole - in the course of looking for a grey top to match my grey trousers, I mistook olive, tan and mushroom pink garments for grey. Now I have to psyche myself up to go clothes shopping and 'out' myself: "Excuse me, this is a strange question but I've got terrible colour vision. Can you tell me whether this matches that?" Sometimes everyone in the shop joins in with their opinions and suggestions - which can be fun if I'm in the right mood.


Re: AZOOR



Jenny,
Only you can decide if you should quit working or not. Your doctor can give you his or her best guess as to when or if you will see a leveling off. But, it will only be a guess.


Re: AZOOR



Hi Jenny,

I was diagnosed a year after high school (19) and was working at a hotel. Few years later I worked in the office at a moving company. I drove only for a couple years and worked until 2011. I stopped to become a full time mom in hopes that I would eventually go back. Unfortunately a little while after i had my youngest, my vision has continued to worsen. For me the flashing lights is not constant but I do get it a lot. I've also lost some color vision. Sometimes I have to ask my 5 year old if a shirt is black or blue. Lol it's insane. Nice to hear from you all.


Re: AZOOR



Hi Lynley, I emailed vision Australia who sent my email to everyone on their list it came back that none of them had heard of AZOOR :) so the people that have been diagnosed here have not reached out to them. My central vision so far is okay I sometimes have to move my head around a bit more because of the blind spot so slower to read, but generally still okay.

I have thought about clip ons but I would need full wrap arounds so the lights dont get through so I dont think clip ons are the answer,

I need to stay away from this lighting, especially now I know the lights are contributing to my condition and may have been the trigger with a compromised immune system. Will talk to retina surgeon on Monday. But I will put myself first and I will no longer compromise my eye health for the sake of work.

My son just found a way to lower the computer screen to match day light, and its fantastic if you are interested check this out. I dont think I can do this at work because I would not be allowed to download the app as its a govt dept. So at least I can now use my PC without worrying about my eyes, you should notice less typos now:)

instructions here.

f.lux
Software to warm up your computer display at night, to match your indoor lighting.
justgetflux.com


Jenny


Re: AZOOR



Can you shade your eyes from the overhead lighting with a visor, Jenny? Though I'm not sure how much help that would be if the overheating lighting is reflecting off white walls. Any chance of covering reflective white walls near you with a non-reflective fabric? Also, it may be worth asking your retinal surgeon for a referral to a low vision clinic - there's a good chance there'll be an occupational therapist or optometrist at the LV clinic with more experience than most in dealing with lighting problems.


Re: AZOOR



Thanks for your replies I would love anyone to email me at jennydahl62@yahoo.com
I work in a brand new energy efficient building so they cannot change globes unfortunately

I am still having the flashing lights in both eyes have been since early July in both eyes all day every day

It's better at night just have this vision around the edges like I have dirty glasses that went away when I had 10 days off work away from the bright white lighting.

I have read recently that people with an auto immune illness is more vulnerable to damage of the retina from uv light.

Before this I had perfect vision except a number 2 script for reading. So far my central is OK besides blind spots and some colour loss

Great to hear from you it's nice to talk to people that are maintaining their vision

Oh and I am 53 so they might like to consider their average age now I think that is 3 of us :)


Re: AZOOR



Hi Jenny - I worked in a medical laboratory. I left to have children, and then became a full-time non-fiction writer, working from home. Most studies suggest that azoor usually strikes people in their 30s or thereabouts, but like Cynthia I was older - 67 - when I was diagnosed. I'm now 72 and in otherwise good health. The azoor plays havoc with my ability to read. For a while I thought the standard of proof reading had plummeted because I kept reading stuff that didn't make sense. Now I know that unless I read very slowly and carefully I'm in danger of missing out words, or whole lines, of text. I had a lot of bizarre visual disturbances in my first year with azoor, but either they've settled down or I've got used to them. My main problems, apart from reading, is that my colour vision is terrible, and my dark/light adaptation is very slow. Fluorescent lights still bother me, but not as much. I've just been reading up about light flicker on the Canadian Centre for Occupational Health & Safety website. Fluorescent lights flicker even when it's happening too fast for you to see. This may explain why some of us with retinal problems are upset by fluorescent light. Have you tried LED lights at work, Jenny? They don't flicker and they're good energy savers.


Re: AZOOR



When I was young, I worked in the dental profession. The lights I worked around were much brighter than anything you now experience. I was not diagnosed with AZOOR until I was 61 years old, which was decades after I married and quit working. I recommend to anyone that when you go to the dentist or hygienist, wear a sleep mask for optimum comfort. It blocks the working light very well.


Re: AZOOR



Nicole and Lynley
Where are you eyes at now have they stabilised ?
Do you still have the flashing ?
I had a week off work and away from the lights and in Sunday I said to hubby the feeling around the edges of the dirty glasses (at night with no lights on the flashing is almost non existence) has gone maybe I'm getting better. But after 3 days back at work it was back.
for me I feel the lighting is definitely the trigger.
What type of work do you both do or did.
I am going back to retina surgeon to discuss on Monday

Jenny


Re: AZOOR



Hi Lynley. I definitely have my moments where I just break down and ask "why me"?. But then I quickly remind myself that things could be worse and I am thankful for the vision I still have. My children are 13, 5 and 2 1/2 years old so they keep me very busy. They are the reasons I keep myself going everyday. I try to just enjoy life and spend time with family and friends by getting together, going to the beach or out to dinners. It surely helps take the mind off of things for a bit.


Re: AZOOR



Hello Nichole, lovely to hear from you. Our responses must have crossed in cyberspace. As you say, it's good to have a community of others who know exactly what we're dealing with. It certainly can be frustrating and lonely when you're the only one with a disease nobody has heard of. I think we all go through patches of worrying about losing the sight we have left. I'd be interested in hearing about how others cope. Sometimes I just have a day or two of feeling sorry for myself, then my bossy self kicks in and tells me to count my blessings. Sometimes I take it easy and do things I really enjoy doing. Sometimes I do practical things that I know will be useful if my sight deteriorates further - like copy out favourite recipes in big print. What do you do?


Re: AZOOR



It got through this time, Nicole. Looking forward to your reply. Lynley


Re: AZOOR



Hi everyone. I started this post in 2012 and completely forgot about it. I am so amazed at how much support there is on here. I am 33 years old from Honolulu HI and I was diagnosed with Azoor in 2001. Started in my right eye then eventually both. I've lost all of my peripheral and I also see floaters and flashing lights. During the day when it's bright I have to wear sunglasses or it is extremely hard for me to see and at night it's even worse. It continues to get worse over time and my biggest fear is that one day I'll lose the little sight I have left and that scares me. I'm a stay at home mom with 3 kids and do everything a regular housewife would do. Sometimes it does get difficult to manage it all but I do my best. I don't drive so my family helps out a lot. Thank god for them. I always tell my husband I wish they could invent a goggles that could show people what we see and go through everyday so it could help them understand. It's nice to know there are others who know exactly what I'm dealing with as it can get very frustrating and lonely when there's no one here who really understands it. if you're reading this thank you for listening. Hope you have a beautiful day.


Re: AZOOR



Testing.....been trying to reply to this post but my messages never go through.


Re: AZOOR



a visor indoors! More good thinking from Cynthia. Thanks!


Re: AZOOR



The light in buildings is directly overhead. It is like having the sun just a few feet above our heads. I don't spend much time in such places, either. I have a friend who always wears one of those visor type hats that golfers wear. I would think that one of those with protective glasses could have style and be very comfortable.


Re: AZOOR



Cynthia - four years down the track, lighting is far less of a problem for me. As long as I place myself with my back to the window I'm usually ok. Fluorescent lights in buildings still bother me though. I just try to avoid them, or leave asap. But you have inspired me to try some different sunglasses.


Re: AZOOR



I should have added that this points to a very interesting problem. How do we keep ourselves and our guests comfortable? I think this is a very good thing to think over.


Re: AZOOR



Lynley,
I have been thinking about your interior light comfort issues. Would wearing your sunglasses around the house allow you to open things up when visitors arrive? I know how much wearing mine helps me. Or, could you reposition your furniture to block some of the exterior reflections?


Re: AZOOR



Amazon.com has some inexpensive yellow over existing eyeglasses glasses. One style clips on. I hope that you can find something there that will help you at least temporarily.


Re: AZOOR



Sorry about typos.

not disease should be distresses. Silly phone and auto correct.


Re: AZOOR



Thanks for the updates and suggestions. I don't find natural light that bad at all. It's the bright white light that irritates me the most. At home I have all the blinds open and natural light streaming in but I don't need to have any artificial lights on at all.

At work I am meeting again with the OT to work out the lighting issue. You are problems right it's the mixture of the strong artificial light and the natural light that diseases me and worsens the flashing

I have just had a week off so going back to work this morning will be interesting.

I have emailed vision Australia to see about clip on I dint want to get new prescription lenses until I know my eyes have stabilized.

Jenny


Re: AZOOR



Thanks Bryan, it's great to have your input. And you're right, just because fluorescent lights are bothersome, it doesn't mean they're harmful. Also some visually impaired people find that fluorescent lights suit them best. So everyone needs to find the sort of lighting that works for them. Good reminder about absorptive lenses too.
Jenny, I find a lot of contrast between light and shadow in my environment can upset my vision. Even if the sun isn't coming in the window but is just shining brightly on a surface outside, the bright outside/shade inside contrast makes everything inside very hard to see. So I end up closing the curtains on a sunny day to keep the light levels in my visual field at a more even level. It's a bit embarrassing when visitors arrive "Why have you got all the curtains closed? It's a gorgeous day outside!" but the bottom line is I function much better in even light. So Jenny, I'm wondering, can you get screens to pull across the windows near you at work on a sunny day?


Re: AZOOR



Just a note of support regarding Lynley's important and helpful note earlier this week about the article Jenny had mentioned, and also a note of explanation about my comments that I submitted, and about lighting. I mentioned in my comments last week that I had never heard of or previously read that article she referred to, and when I read it, I felt it was too conservative--and that it went too far. I don't know anyone who has said, scientifically or even otherwise, that fluorescent lighting is harmful to your eyes. I have heard some persons report that fluorescent lights may provide some glare for them, as I think Jen did.

However, there has been quite a bit written on possible cautions about "blue light," present in sunlight, as well as in full spectrum or daylight lamps (but NOT fluorescent). This possible concern is applicable for lamps over 5,000 Kelvin. Please note that this is not a problem for incandescent, halogen, or fluorescent lamps and lighting, as well as for those LED lamps rated under 5,000K.

Also, regarding the question of absorptive filters: They are indeed beneficial and important in reducing glare, and in blocking out bothersome blue light and UV light. The colors of filters that work best for this are: orange, amber, dark plum, and yellow.

You ladies have a tough condition, with the nasty photopsia, and the multiple other challenges. Your good attitudes, your help for each other and others who may have AZOOR, and your pro-active approach is very admirable. Best wishes to you.

Bryan Gerritsen, Low Vision Specialist
North Ogden, UT USA


Re: AZOOR



Out of desperation I am trying Chinese medicine, had acupuncture and massage on Friday and I am now on these herbal tablets, tiny little things that I take 10 of before meals.
Will keep you posted if I see any improvement, of course it may coincide with the natural progression of AZOOR but its natural and cannot hurt.

I couldn't find any support groups in Australia the AZOOR society Facebook page does not appear active so I have started my own Facebook page to reach out to others in Aussie.

https://www.facebook.com/AZOORAU

Today is a beautiful spring day in Melbourne going to go out for a very long walk. :)

Hope everyone is having a great weekend.

Jenny




Re: AZOOR



Acute zonal occult outer retinopathy occurred either during or immediately following pregnancy in 5 patients (10%). Three of 5 patients had an exacerbation of AZOOR during a second pregnancy. Two patients had a subsequent pregnancy without an exacerbation of AZOOR. The onset of AZOOR occurred following a tick bite and hepatitis B vaccination in 1 patient each.


Acute Zonal Occult Outer Retinopathy: A Long-term Follow-up Study
J. DONALD GASS, MD, ANITA AGARWAL, MD, AND INGRID U. SCOTT, MD, MPH


Re: AZOOR



Currently there is no definitive test for inflammation — the best that conventional medicine can do is measure blood levels of C-reactive protein (a pro-inflammatory marker) and the irritating amino acid called homocysteine. Causes Of Inflammation
by Marcelle Pick, OB/GYN NP


Re: AZOOR



Jenny, I think you'll surprise yourself at how well you're handling the stress. Do keep in touch. And another thought - keep a journal of what's happening and how you're feeling day to day. Writing things down helps to get at least some of the thoughts out of your head (where they just tend to go round and round) and puts them down on paper where they're more likely to stay put in a tidy line. And it's really interesting to look back on the milestones along your unexpected and unwanted journey and compare notes made at the time with retrospective memories of the same event.


Re: AZOOR



Thanks Lynley you actually made me cry.. in a nice way. :) now I can hardly see the screen. LOL
yeah they started with my brain before I was sent to the Ophthalmologist so had the MRI so glad I know that is clear already. so far I have had the brain MRI a pelvic ultra sound, chest xray, pap smear, mammogram, full bloods and tomorrow I am having a colonoscopy, see a gastro specialist in November, so far tests keep coming back negative they are just being careful, I am positive they will keep coming back clear.

like someone else has said I go to sleep at night hoping I will wake up and my eyes will be clear, so looking forward to that day, at night the flashing is not there, it just looks like I am looking through dirty glasses, its a weird disease.

At work the white light the white walls and the full length windows in the high rise building makes my life terribly hard, so I will look at all the options, I have had an Occupational therapist appointed to help me adjust my work station so hopefully when I am back at work in a week we will have a plan in place, I am very lucky work is very supportive.
and Cynthia thank you for all your support for everyone on this message board.


Re: AZOOR



Many thanks for your input Cynthia. Your comment are always so very thoughtful and helpful. Much appreciated.
Jenny, I was screened for just about everything too. Including brain tumours. Happy to report my brain is fine. Phew. Most people find that the flashing reduces over time. Also we probably get better at finding ways to cope with it. Sometimes, months down the track, the improvement sneaks up on you - there'll come a time when you look back on your day and realise that there were times when the flashing hardly bothered you at all. Meanwhile, I think you're doing everything right. Looking after yourself. Finding information and support. Figuring out what works for you. You have so much to cope with, but you can be proud of the way you're handling it. I've just realised that the people around you probably feel the way I feel - I wish I had a magic wand so I could wave it and make your horrible visual problems go away. Oh well, no magic wands but lots of caring coming your way.


Re: AZOOR



Thanks Cynthia yes I have read that must see if I can get a prescription done with the Tint and anti
glare.

Any idea how long the attack is, mine is getting close to 4 months now of flashing in both eyes. I go to sleep with it and wake up to it no rest at all.

Also I don't think mine can be linked to my immune system as it didn't follow an infection and my blood tests were clear they really don't know that causes it do they.
Fasting today for yet another cancer screen tomorrow starving at the thought .. lol


Re: AZOOR



I want to say something to all of you wonderful people here who do not have AZOOR. Please understand how difficult the photopsia is during the attack phase and beyond that. It can make you half crazy because it doesn't stop. It wakes you up at night and distracts you all day. It is exhausting. The only similar experience in my own life was the months of radiation sickness and thyroid shrinkage that I experienced with my Graves' disease. Thanks for being here with us and for us.


Re: AZOOR



Jenny, you might want to re-read this earlier post: Re: AZOOR
Posted by MaureenD on 1/20/2014 at 11:21 AM

In it MaureenD discusses absorptive lenses and other issues that you might find helpful. I like to re-read the entire thread here. I always find things that I missed or didn't understand as well as I do now.



Re: AZOOR



Thanks everyone for your posts, and Lynley for your advice... yes I am looking after myself.
In my situation my workplace will replace the globes for me if it means it helps me stay at work and function to my full capacity.
Also with my work cover I can make a claim if I think something at work contributed to my condition its up to them to prove that it couldn't. So I guess I am trying to determine if that's feasible or pointless, I am at no means trying to be an alarmist just making sure I am covering every angle, its how I deal with things, (bit of a control freak in an uncontrolled situation.)
I have taken this week off to get some tests done and relax and look after me as you suggested, it has been a long 6 or 7 weeks of testing to get to diagnosis and its time to spoil myself.

thanks again everyone, I am glad I found this group, oh and sorry in my delay in responding, I am sleeping while you are awake.. :)


Re: AZOOR



It's great to have so much interest in the lighting issue, but I have to sound a note of caution. I looked up the article Jenny mentioned and found a damning letter published in response to it which opens with "Walls et al. are undoubtedly well intentioned, but ill informed on lighting technologies and practices. Consequently statements in their recent article on fluorescent lighting and eye disease were technically incorrect and unnecessarily alarming to the public."
I also saw a useful-looking article entitled "Which lamp will be optimal to eye? Incandescent, fluorescent or LED etc" but when I went to read it, I discovered that it had been retracted by the publication (the authoritative International Journal of Ophthalmology) indicating that the article contained serious errors.
So it seems that lighting is a bit like azoor, the experts are still looking for answers. Of course we want information. Of course we're frightened about what the future may bring. Of course we want to do what's best for our eyes. But I think it's time to take a deep breath, and to calm down and stand back. I don't think we can ever stop worrying, but learning to live with uncertainty gets easier with time. Ultimately everyone has to do whatever works best for them, but I think it's important to be wary of trying suggested solutions that aren't backed up by enough sound testing to lead to a scientific consensus. Even trying well-tested solutions can make us anxious because we wake up every morning and gaze at the ceiling thinking "are my eyes better today than they were yesterday, or the same, or worse?" I don't think it's worth going through that sort of anxiety with untested solutions. Especially when, along with the anxiety there can be the expense of buying lamps or whatever that which may make no real difference in the long run. So let's just relax for a while. Go for a walk on the beach or in the park. Go for a swim. Catch up with friends. Buy yourself a treat. Whatever works. Do it!


Re: AZOOR



I think that I can speak for all of us and say a big thank you for taking an interest in our AZOOR group. Jenny is from Aust, Linley is from NZ and I am from the US. We appreciate your time and expertise. Linley is our peer advisor. She has AZOOR also. Everyone here continues to learn about the disease and live normal lives as we do so. I am waiting to hear about Gass's number 13. I'll share whatever and whenever I find out. We are all looking at different aspects of AZOOR to try to make sense of it all. Thanks again!


Re: AZOOR



I would like to add a few comments regarding Jenny's, Cynthia's, and Lynley's mention of lighting and glare. I had not previously been aware of the article on the NIH website that Jenny cited above: Eye Disease Resulting From Increased Use of Fluorescent Lighting as a Climate Change Mitigation Strategy
Helen L. Walls, PhD, MPH,corresponding author Kelvin L. Walls, PhD, and Geza Benke, PhD. However, it correlates very strongly with things I have written and lectured on, and with writings by Dan Roberts (of www.mdsupport.org) on "The Blue Light Hazard." Before commenting on that, however, I would like to state I have found that yellow colored sunglasses or glare shields are perhaps the most helpful option for patients with sensitivity to glare when indoors, whether by a window, when using a computer or seeing TV, or in a building with fluorescent lighting, such as a grocery store, office, or school. The brand and the cost of the sunglasses is irrelevant, it is the color. Yellow sharpens things, and enhances the contrast, while cutting 100% or UV light, and generally between 50% to 55% of "blue" light. Cocoons, NoIR, and other companies sell inexpensive yellow colored glare shields that are either fit-over, clip-on, or wraps (to be used without prescription glasses). Cocoons Low Vision sunglasses have a lifetime warranty, are scratch resistant, come in 7 sizes, and are about $32 for fit-overs and $20 for clip-ons. They are a fantastic option for reducing glare yet enhancing contrast. I strongly recommend them. For bright sunny days (to be used outdoors), I recommend amber/orange colored sunglasses. This color blocks out 100% of UV light, and 100% of blue light.

Now back to the comment about UV and blue light. The article referred to stated that you should have a Kelvin rating under about 3,700, and only transmit light that is higher than 500 nanometers. I think that is a little too conservative, but is probably good advice. I tell patients to avoid anything above 5,000 Kelvin, and anything lower than 470 nanometers. "Blue" light (and UV light), which are a great source of scatter glare, and many now also think that it may be linked to retinal damage, is present in any light above 5,000 Kelvin (K). You can see a lamp's Kelvin rating on the box when you purchase it. If the box does not list the lamp's Kelvin rating, you can always call the company's toll free number, listed on the box. Blue light (and UV light) is also present in light between 400 and 470 nanometers.

Almost all new "daylight" lamps or "full spectrum" lamps are over 5,000 Kelvin. Some LED lamps may be over 5,000 Kelvin, so read the label. Some LED lamps, however, may be very low Kelvin, such as 2,700K or 3,200K. Now regarding fluorescent lamps. Some persons find that fluorescents have significant glare. Some people even report headaches when around them for a period of time, such as in an office, school, or grocery store. Fluorescent lighting is generally in the 4,200 to 4,700 Kelvin range. The glass in most fluorescent bulbs shield out any UV light. However, some blue light may pass through. And some older fluorescent bulbs may also emit UV light. I still suggest yellow colored sunglasses (or clip-ons) to help block out the UV and blue light, when you are bothered by this, or if you want to minimize your exposure to UV and blue light indoors, on a cloudy or overcast day, in early mornings or late evenings, or when traveling in a car (if regular sunglasses are just too dark). Best wishes.
Bryan Gerritsen,
Certified Low Vision Therapist
North Ogden, UT


Re: AZOOR



This is such a stressful time for you Jenny. You're right, not knowing is the most stressful of all. Our heads spin with worry about where all these horrible visual disturbances might be leading. And the only answer is: we don't know. The reality is that the uncertainty never goes away, but gradually we learn to live with it. For most of us it takes about a year to really come to grips with the idea that we're stuck with this horrible thing. For a long time we never quite give up the hope that we'll wake up one morning and find it was all a bad dream. Realising that the uncertainty is here to stay isn't easy. It takes time to tell yourself that azoor may have messed up your vision but you're not going to let it mess up your whole life - that despite the azoor, you're still the strong, lovely, interesting person you always were. So be kind to yourself Jenny. Do the things you enjoy doing. Do the things that help you relax. Shout and kick things if that helps, but count your blessings too. Gradually the stress will start to fade, and you'll see the blue sky through the clouds. Big hugs, Lynley


Re: AZOOR



thanks for the info, I dont find the computer screen a worry at all, sitting at home in natural light in front of a computer the flashing is there but not as distracting as when I am at work.

My flashing is every waking moment in both eyes I don't get a break from it has been like this since early July, I am waiting for the day when I get a break. I have lost peripheral in both eyes and have a blind spot and lost some color vision. I was tested again last Thursday and I have had no change in the last two weeks, I have began weaning off the steroids so I am hoping I have stabilised and I can get a chance to get use to the vision I have, my central vision luckily is still good.

Night time is the best for me when I am sitting in our cinema room and the only light is the screen.

I have good prescription sun glasses but way to dark to wear at work I cant read the screen. All of my work is computer based.

I just found the article I posted above interesting as they have linked fluro lighting with retina damage, and I believe the energy efficient lighting may have been introduced the same time GAS started researching AZOOR.

Also my specialist says there is a remote possibility that AZOOR can be linked with paraneoplastic syndrome, which is when the body secreats a hormone from a cancer cell.. very remote but now I am being screened for all common cancers.

I seem to be at the mature end to get AZOOR as well I am 53 next week.

I have been managing to work around all my tests, but I have now taken a week off to try to relax and see if that will help my eyes a little. I am lucky I have a house with a lot of natural light so I dont have any lights on when I am at home.

I work in the public service so I am lucky there as well and they will do what they can to adapt the lighting.

I find the most frustating thing is not knowing an outcome, not knowing when the flashing will stop and how my eye sight will be at the end of it.


Re: AZOOR



Cynthia - that's a wonderful analogy, and absolutely spot on!


Re: AZOOR



After all the reading I did about AZOOR, I had to put it in everyday terms for myself. I think of it as a volcano. For some, it erupts all the time until there is nothing left. For others, it erupts for awhile and then goes dormant for many years and then starts up again. And for still others, it erupts and then becomes extinct. Part of the burden is that there is no way to predict just what it will do for us individually. I hope that with the ongoing improvement of eye photography that some as yet unseen visual clues will solve this part of the puzzle of AZOOR. Thanks for listening.


Re: AZOOR



Jenny - One of the really annoying things about azoor (and some other eye conditions) is that we have problems with not enough light, or too much light, or both. Whether it's artificial light or sunlight, I think it's the brightness of the light that's the problem. The UV light in sunlight is a known risk factor for cataracts, and possibly for other eye conditions, but I think the jury is still out on whether the light from computer screens is damaging or just, for some of us, really annoying.

A lot of people, including me, have trouble with fluorescent light even if its not bright or energy efficient - I think there's a faint flicker that people with less sensitive vision don't notice.

Jenny I think there is at least one good low vision clinic in Melbourne. It would be worth asking them what they suggest. LV clinics usually have an optometrist with expertise in lighting.

You may not be able to do anything about the lighting in your building, but if you have the support and advice of a lighting expert from the LV clinic you may be able to find a way to cut down the glare from your computer screen. Other brightness problems may come from windows that could benefit from sun screens, dazzle from lamps that need shades so they won't shine in your eyes, and highly polished surfaces that need covering or replacing with matt finishes. And as Cynthia says, getting the right sort of sunglasses helps too.


Re: AZOOR



I am wearing sunglasses as I write this. I cannot look at my monitor without them on. I wear sunglasses in any bright artificial indoor lighting. I also don't leave home without sunglasses on. Light sensitivity is part of the AZOOR experience. I don't know how to answer you specific lighting question.


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Sorry previous post was a quick one as I was at work.
I have had flashing since may 14 but it was intermittent and diagnosed as an optical migraine.

Early July this year the flashing become all day every day, at first they thought it was neurological, so had an MRI, long story short was diagnosed with AZOOR about four weeks ago.

I live in Melbourne Australia, I work in an energy efficient building with energy efficient lighting, the white lights make the flashing unbearable so I find it hard to stay focused at work. The AZOOR is in both eyes have lost a lot of peripheral vision and some blind spots, central vision is general ok so far and hasn't got any worse in the last two weeks. I have been taking steroids for 4 weeks and just about to start weaning off them.

I found an article that talks about the new energy efficient lighting and impacts on the retina.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC322242...

Now it made me wonder when did we start switching to energy efficient lighting. Gas's research is dated early 90's didn't energy efficient lighting start around then?

Out of curiousty how many people work in the buildings that have these "white lights, very curious to know.

thanks

Jenny - Melbourne Australia


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Hello all, I have recently been diagnosed with AZOOR in both eyes, have lost peripheral vision and continue to have flashing all day every day, doing research I have found articles linking energy efficient office lighting to retina disease.
I am curious how many people with AZOOR work under energy efficient white lighting.


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Hi merejere1998 - I'm glad you're find this site useful. Learning to cope with azoor is a difficult lonely journey so it's great we can all support each other.

Merejere, to get to the bottom of what may be causing your pain, the best thing you can do is get your eyes checked asap.

The trouble with azoor is it makes us worry a lot. For months, all we can think about is what's happening with our eyes, and the more we worry the more obsessed we become with worst-case scenarios. The bottom line is that there are any number of things that could be causing your pain, so get your eyes checked. If it's something that can and should be treated then the sooner it gets attention the better. If it's not straightforward then you can get to work on the task of learning to live with uncertainty and figure out what to do next - that's the hard part, but believe me, there is some blue sky behind the clouds. Big hugs and warmest best wishes, Lynley


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Hi All!! I've found this site a source of comfort and support since being diagnosed with AZOOR in February. After a short time my eye stabilized, though the change in vision loss was difficult and took longer to accept. I'm so grateful to have had a place to look on quietly to receive support and guidance from those going through this journey as well. I've currently been experiencing pain behind my eye and today the pressure is very intense. Does anyone else have this experience or have any suggestions??


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Hi Jocelyn20 - flashing lights can indicate all sorts of things. It's important to get it checked asap in case it's the start of a retinal detachment - which can be repaired without too much fuss if it's caught early. There are other things that it could be, some of them are nothing to worry about. If you report your concerns when you make an appointment with an optometrist or ophthalmologist you should be seen fairly quickly. Best wishes, Lynley


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Can someone please describe what flashing lights symptoms are like? Do they vary by person? Do they get worse? Not sure if I am developing them.

I've been noticing very quick flashes. They are not constant and happen maybe once 5-30 minutes. I can't tell if it's just in one eye or both since it flashes very quickly.


Re: AZOOR



Michael Blankenship is one of the 21 featured artists at Turned Treasures and Michael happens to be completely blind. I had the pleasure of meeting him at the gallery when he was the galley’s featured artist during the Main Street Art and Wine Walk.
Michael explained that “I was a flat wood worker. I had never turned at all. I developed an autoimmune disease that fed on the rods and cones in my eyes”. The disease is AZOOR (acute zonal occult outer retinopathy), a rare condition with a long name.
Michael demonstrated his great sense of humor asking me, with an engaging smile, to repeat the full name of the disease. I got the AZOOR part right. “My doctor believed and told me I would not go blind. And maybe that’s why I did not have the depression problem that most people go through (when they lose their sight).” It has been 10 years now since Michael completely lost his sight. - See more at: http://straightupmagazine.net/2014/12/treasure-tur... to his wife, Jackie, “Michael is a determined man, a Type A personality. He had to find something to do.” With a loving smile, she continued “I’m a nurse. I work in the ICU. I have seen all kinds of stuff. And I knew lots of doctors who could fix him up if necessary. I pushed him and encouraged him.”

Michael continued his story. “It took me about a year to go completely blind. At first, me and my brother-in-law decided to set up a saw mill on his farm. Then I lost too much sight to travel. One of our wood customers handed me a bowl he had turned. I was touching it and thought, that was really neat. He said he thought I could do this. I hadn’t been in my shop for four years and I was going try it. It took me about six hours to turn my first bowl. And I burned out the motor of the lathe in the process. I was so proud of that piece of junk. I showed my wife and we went out an bought a new lathe and I started turning. - See more at: http://straightupmagazine.net/2014/12/treasure-tur...
- See more at: http://straightupmagazine.net/2014/12/treasure-tur...


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Finding the words to explain what we're seeing is a huge challenge. I find the terms that are most likely to provoke an understanding nod are "visual static" or "like a badly tuned TV set". Of course nobody sees what we see, but some descriptions are easier to imagine than others. And when people try to imagine what we describe they develop some understanding of the problem.


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Finding the words to explain what we're seeing is a huge challenge. I find the terms that are most likely to provoke an understanding nod are "visual static" or "like a badly tuned TV set". Of course nobody sees what we see, but some descriptions are easier to imagine than others. And when people try to imagine what we describe they develop some understanding of the problem.


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I can laugh at myself now when I tried to explain things. I told my regular ophth that I thought that my eye was being cooked in a microwave. (You know, bubbling and rotating). Colors! Shapes! I talked to the neuro about diamonds! I was quite a sight during the attack phase. I thought it would never calm down a bit. But, it has. It took a year and a half for things to enter the incomplete convalescent phase. I have visuals every day but not as often. They come and go. I am not afraid anymore. A friend of mine joked that some people would pay to see what I see.


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Like diamonds!


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Yes! I look over my city from my house on the hill. One day the low sun, and my photopsia, made every reflective surface sparkle. It looked like the city was swathed in sparkling fairy lights!


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I was admiring at a beautiful tree the other day. It was so green and lush after a rain. Then, in my field of vision a lovely blue green rectangle appeared within the leaves. It made the tree even more beautiful. Sometimes, I think the photopsia is a gift.


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You're absolutely right, Cynthia. Sometimes searching for a cure can be a way of avoiding the much harder but far more rewarding task - learning to live with azoor. Being well-informed is a big part of that. So is realising that you're the same smart and interesting person you always were, and there's so much you can still do and enjoy. Azoor may have messed with your sight, but it doesn't need to take over your whole life.


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I think that there has to be a reasonable trade off between a 'cure' and the disease itself. I had a doctor once who told me that he did not like me asking questions. Well, I fired him and got myself another doctor who welcomed questions.


Re: AZOOR



Thanks for posting those pieces Cynthia. It's reassuring to see that the vision of all seven patients in that study improved, with or without steroids. And good work by the AZOOR Society. Even if the outcome of a funding application is disappointing, at least it raises awareness of azoor among funding decision makers and improves the chances of getting a better result next time.


Re: AZOOR




The AZOOR Society
June 17 ·
Sadly we did not make the cut for our first application for research into AZOOR.
The outcome of a grant application costing (£170,000) from Prof Andrew Webster at Moorfields Eye Hospital addressing the immunology of AZOOR. scored really highly (ranked 11th) but Fight for Sight only had funds to make awards to the top 7 ranked applications.
However the trustees of the society Jan Ford and Rita Upchurch have just signed a contract agreeing for a joint Fight for Sight/AZOOR Society small grant award for AZOOR research as part of its joint small grant awards scheme to be advertised in mid-July. These joint small awards are for £15,000 for one year with each partner charity contributing £7,500. All applications are peer-reviewed and scored by a specialist panel of 6 clinician scientists.
It is difficult to not feel disheartened having waited over half a year for this result however this small joint award is perhaps a more achievable first step.
We are very grateful for our partnership with Fight for Sight. At this point none of this would be possible without their help.


Re: AZOOR



Optometry & Vision Science:
Post Editor Corrections: August 6, 2015
doi: 10.1097/OPX.0000000000000683
CLINICAL CASE: PDF Only
Improved Photoreceptor Function in Male Acute Zonal Occult Outer Retinopathy.
Sakai, Tsutomu; Gekka, Tamaki; Kohzaki, Kenichi; Horiguchi, Hiroshi; Shikishima, Keigo; Tsuneoka, Hiroshi
Published Ahead-of-Print
Collapse BoxAbstract
Purpose: To describe male acute zonal occult outer retinopathy (AZOOR) patients with improvement of photoreceptor structure and visual function.

Case Series: Medical records for eight eyes in seven patients (mean age, 36.9 years; range, 22 to 57 years) with AZOOR were reviewed retrospectively. Of the seven patients, four were treated with high-dose methylprednisolone therapy and three were not treated. All patients presented with photopsias and severe vision loss in the affected eyes. Visual acuity ranged from 0.2 to 1.5 on a Snellen decimal scale and Humphrey visual field testing showed blind spot enlargement or ring scotomas. Fundus and angiographic examinations found no specific abnormalities, leading to a diagnosis of AZOOR. Spectral domain optical coherence tomography showed attenuation of the photoreceptor inner segment ellipsoid zone. Multifocal electroretinography demonstrated that there were decreased responses at the site of the spectral domain optical coherence tomography abnormalities and corresponding visual field loss. Three patients had a spontaneous resolution with restoration of photoreceptor structure and visual function, and four patients had a visual improvement with restoration of photoreceptor structure and visual function after steroid pulse therapy.

Conclusions: These results suggest that male AZOOR patients may have a tendency of visual improvement both with and without treatment.

(C) 2015 American Academy of Optometry


Re: AZOOR



That's a wonderful list Rong! Those four doctors are the best you can get!


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yes, after all this time, I still have my doubts. I asked my doctor "do I really have AZOOR?". And the doctor didn't give me a straight yes or no, only said "at least you have all the clinical manifestations of AZOOR". Well, whatever it is, I find myself gradually growing into this online AZOOR community. Cynthia's research spirit and Lynley's positive attitude is something i enjoy to read about everyday i log in here.
I've decided against Prednisone, and am now sticking to simple, plain Chinese treatment. Besides all those herbal pills i swallowed down, part of the treatment is what my mom called "Faith" - To get well get, you just have to believe you are going to get well.
4 best doctors fin this world
1. Diet & nutrition
2. Exercise & Rest
3. Faith
4. Friends & Family


Re: AZOOR



What stood out for me in the Mrejen et al paper was "After reviewing more than 400 cases diagnosed or referred to us as AZOOR or AZOOR complex, we assembled 30 cases that fit our current definition.." This illustrates the difficulty physicians have in deciding what is, and in not, azoor. Looks like there'll be a lot of uncertainty surrounding questions of diagnosis, treatment and cure for a while yet. We're so used to turning to modern medicine for answers, it's a bit bewildering when they haven't got any. Learning to live with uncertainty may be a bigger challenge that learning to live with azoor - but we can all feel proud that we're up for the challenge. And don't forget we're still the smart, interesting people we were before the azoor. Our family and friends still love us. There is much to be thankful for despite the azoor. Sorry if I'm sounding a bit Pollyanna-ish, but I do find that counting my blessings is a good way to lift my spirits when the azoor gets me down.


Re: AZOOR



no histopathological correlations exist to clarify the nature of the observed clinical manifestations.

That really stood out when I poured over this report. Well, I'll be 63 in October. I have decided to ask my doctors if I would be a good candidate for eye autopsy. Maybe I'm too early into the disease. It is a legal process in the US. If I qualify, I'll have to see a lawyer to have it included with my will documents.

I'm not so upset that they 'asked' about that anymore. It is better than advertising in a magazine.

You have seen the best results of my research. I am so happy to be able to share it with you all. Thanks again for all you did for my morale and viewpoint. I'll be looking in every day.


Re: AZOOR




Discussion
Although AZOOR was first described more than 20 years ago,1 its etiology and treatment remain unclear. After reviewing all the cases diagnosed in our records as AZOOR, we observed a lack of consistency in the ophthalmic community on the definition of this disease. No clear classification delineated the initial or progressive clinical manifestations, including the angio- graphic changes and the visual function as measured by elec- trophysiology. Some of the confusion in the ophthalmic litera- ture can be traced to the original classification of AZOOR by Gass.40 Based on his keen observations, Gass hypothesized that AZOOR manifestations originated in the outer retina, but he could not show such changes without modern multimodal imaging. He classified an early stage of AZOOR as occult cases with a normal fundus.40 The SD-OCT now shows clearly that such cases have loss of photoreceptor outer segments, begin- ning with abnormalities in the ellipsoid line.18,41-49 However, even today, rare cases diagnosed as AZOOR, including case 13 in the original series by Gass,1 maintain a virtually normal fun- dus, with little or no chorioretinal abnormalities. We believe that these cases represent a separate entity, which we will describe in a future study. A principal source of confusion in the diag- nosis of AZOOR is the variant termed AZOOR complex by Gass.40 He originally created this AZOOR category because of similari- ties with the white spot syndromes, including the demograph- ics, clinical findings, and even the presence of systemic auto- immune diseases. Most described cases in the ophthalmic literature represent AZOOR complex15,24,35 and not AZOOR as we describe it. However, some reports of AZOOR seem to be con- sistent with our classification.37,50
In this era of multimodal imaging, AZOOR can be clearly differentiated from multiple evanescent white spot syn- drome, MFC or punctate inner choroidopathy, acute macular neuroretinopathy, and other white spot diseases. The tri- zonal pattern of FAF imaging is a defining feature of AZOOR, particularly the hyperautofluorescent line demarcating the nor- mal retina from the AZOOR lesion. With ICG angiography, a tri- zonal pattern is observed as well. The trizonal pattern seen on SD-OCT showing disruption of both the ellipsoid and the in- terdigitation lines is characteristic (Figure 3 and eFigures 2 and 3 in the Supplement). However, review of our cases revealed a rare but distinguishable set of variables that we believe rep- resents a strict definition of AZOOR. This new definition al- lowed us to identify 30 bona fide cases of AZOOR from scru- tinizing 400 records at 2 world-renowned referral centers for retinal diseases, which emphasizes the rarity of the disease.
In particular, AZOOR complex diseases have commonly been confused as AZOOR as we define it.
What is distinct about AZOOR to help physicians distin- guish it from other diseases of the posterior fundus? Unlike he- reditary diseases, autoimmune and cancer-associated reti- nopathies, and toxic chorioretinal disorders, AZOOR can manifest as unilateral and asymmetric lesions. Characteristic symptoms corresponding to visual dysfunction and progres- sive clinical and imaging findings form a constellation of find- ings that are highly specific as described herein. The sequen- tial outer retinal, RPE, and choroidal zonal lesions and the trizonal features on SD-OCT, FAF imaging, and ICG angiogra- phy are unique in diagnosing AZOOR in these patients. Fur- thermore, no known genetic predisposition or serum antibod- ies implicate hereditary or other inflammatory diseases.Our classification of AZOOR strives to be specific and ad- herent to clinical and imaging guidelines, including the nar- row hyperautofluorescent demarcating line between the in- volved and uninvolved retina, the trizonal pattern of chorioretinal degeneration, and the frequent zonal progres- sion described. However, we believe that the disease ex- presses variability, and 3 of our patients did not show these spe- cific findings but rather diffuse hyperautofluorescence in the areas of involvement, with subsequent development of sur- rounding speckled hypoautofluorescence, as shown in Figures 1and 2. In our series, these 3 cases represented earlier stages of the disease (lasting from weeks to months), but one of them progressed to diffuse hypoautofluorescence over time. We sus- pect that some AZOOR cases may evolve toward more gener- alized areas of hypoautofluroescence rather than the typical trizonal pattern of chorioretinal degeneration, demonstrat- ing the clinical variability of AZOOR in its progression as well.
Our study has distinct limitations. We report only 30 cases, and some lack a full analysis by all imaging modalities at the initial examination and during the course of the disorder. Fur- thermore, no histopathological correlations exist to clarify the nature of the observed clinical manifestations. The precise na- ture of the AZOOR line and the speckled hyperautofluores- cence in the subacute AZOOR lesion is unknown. Lipofuscin may have a role because the demarcating line is orange and hypofluorescent with FA. An alternative explanation may be inflammatory debris in conjunction with accumulated pho- toreceptors, which contain chromophores.
Taken from:Acute Zonal Occult Outer Retinopathy
A Classification Based on Multimodal Imaging Sarah Mrejen, MD; Samira Khan, MD; Roberto Gallego-Pinazo, MD; Lee M. Jampol, MD; Lawrence A. Yannuzzi, MD


Re: AZOOR



Hi, Lynley, hi Cynthia - thank you so much for all this information, which helps a lot for me to understand what is going on! I have downloaded the whole piece about medical ethics and will share with my students in the new semester and get them to think. I am looking at things through a whole new perspective, through this Azoor lens.


Re: AZOOR



That's fascinating Cynthia, thanks for sharing. That they're talking about a really difficult dilemma for doctors, and using azoor as an example, is powerful evidence of just how mystifying azoor is, even to experts. All the more reason for us to question our doctors, and to make sure our decisions about treatment are made on the basis informed consent. I'm not sure how much help this is to Rong, except as reassurance that getting well informed and making your own decisions is the way to go.


Re: AZOOR



Letters: Multidisciplinary Care Treatment Goals, Guidelines Essential for Patients
July 1, 2014 • By Michael D. Lockshin, MD, MACR, and Kirk D. Jenkins, MD
Multidisciplinary Care
The case presented (Ethics Forum, May 2014) is a fairly common event in our (academic) institution. A rule of thumb we always use is to ask the referring physician for clear milestones and measurement criteria for success or failure and to provide to the referring physician our guidelines for withdrawal of therapy.
For instance, in this case the ophthalmologist must state in advance what he or she expects at six weeks, 12 weeks, etc., with consensus that failure to achieve those goals will result in withdrawal (or, much less likely, intensification) of therapy, and the rheumatologist might cite diabetes, hypertension, psychosis or bone loss rules.

We articulate the rules on both sides before proceeding.


Re: AZOOR



Hi Rong - the problem with azoor is that it can often settle down by itself after a while, so it's hard to know whether whatever treatment you used has worked or not. However I can understand you wanting to do something to help yourself - you're obviously a smart, positive person, so why not try Chinese herb medicine. The traditional medicines you mention don't sound like they'll have any side effects, but I'm sure you've got the good sense to stop using them if things don't seem right. The main thing to remember is that eating a healthy diet with lots of fresh fruit and vegetables is essential for your wellbeing, regardless of what medication you're taking. This is something the Chinese do so well, delicious food. Just thinking about it makes me salivate! Get some exercise too, and do things you enjoy doing. These things help your peace of mind at such a stressful time. Best wishes.


Re: AZOOR



Hi, Cynthia- thanks for understanding and more information! I've decided not to take prednisone and try Chinese herb medicine. My mom brought me two remedies: one is pearl powder and vitamin E dissolved in warm water and steam the eye; another is mixture of grape seed extract, pine tree bark extract and lemon, made in isotonic technology. I don't know where mom heard of these eye remedies. But in this situation I would try anything. You just cannot overestimate a mom's faith in a cute for kids.


Re: AZOOR



Wow. A cultural thing. I know a little about China from Chinese friends. (That's why I jumped into the conversation). Can you get a second opinion? Can you visit a doctor in another country?
I'm worried that your white blood cell count might mean some other very different illness than a rare eye disease.


Re: AZOOR



Hi, Cynthia - Here a general doctor and an eye specialist never work together. To my knowledge, we just don't have the system to facilitate this kind of cooperation. if i have a question, i automatially go to internet for help. Thanks for offering so much informative AZOOR data. I remember you mentioned "Acute Autoimmune Retinapathy", which makes me wondering my doctor's Predenisone treatment. She must be thinking my problem is an overeation of immune system and Predenisone will suppress my immnue system. But my anxiety is my whilte blood cell count is already so low, so is my granulocyte. I might be wrong in my reasoning, with so little medical knowledge. But information source is so rare, no doctors to ask.


Re: AZOOR



Hi, Lynley - thank you so much for advice. But the sad situation is that in China questions are never welcomed in hospital. For one thing doctors are busy and tired. In Eye and ENT Hospital of Fudan University (in considered best in Shanghai), an eye sepcialist sees 40 patients from 8:00 to 11:30am. After lunch hour, she have surgeries to perform. Another factor is related to an Eastern culture that values respect for authority. A patient asking too much may be considered as chanllenging authority. This phennomeon is not alone in Chinese hospitals. At workplace we may also cause conflicts if we think critically about authority's policy. I teach "Critical Thingking for EAP course" at unviersity, so natually my educational belief caused myself trouble and made me feel like an alien in my own country.
But here at this AZOOR corner, i feel sort of at home as I read all these messages discussing AZOOR treatment and research fidnings. It's really unpredictable what a rare disease can bring into our life.


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Hi Rong - If you're not sure about the treatment you need to ask your doctor. It's your body, you've got every right to be well-informed about its treatment. Be firm but polite. Explain that you really need to understand why you're taking prednisone. How does it work? What effects is it likely to have? How will the effects be monitored? How long do you have to take it before you'll know whether it's working? - and any other questions you can think of. Good luck!


Re: AZOOR



Have you informed your regular doctor about all of your eye stuff?
I have had mine look at every test--MRI, vision fields etc. What does he or she say about your white blood cell count? I like all of my doctors informed about what is going on with me. I keep them working together and not independently.


Re: AZOOR



Today my doctor gave the first prescrtion after a month's tests for diagnosis. The medicine is simply prednisone acetate, 6 tablets per day for 14 days. After that I will have to go back for further treatment. Is there anyone here who has tried prednisone? I don't understand why to take that medicine, as my blood test already says my white blood cell count is a bit too low


Re: AZOOR



There are reports about AZOOR written in German and Czech. ( None of which I can read). There is a Spanish doctor that is doing hand stands for his patients. There are Japanese and Chinese doctors sending in regular reports.

If you want, as your doctors what kind of Azoor you have. There are 3: Type 1, Type 2, and Type 3. These types reflect the starting point of our AZOOR.


Re: AZOOR



You're right Cynthia - there are doctors out there who take azoor seriously, but it's as much a puzzle for them as it is for us.


Re: AZOOR



I'm happy to share the best that I have with you. The HTML and my rookie computer skill don't allow for any more stuff now. Rest assured that if you look hard enough, you will find lots of things posted. Just be prepared for a lot of chaos.


Re: AZOOR



Hi, Cynthia, Hi, Lindley, and everyone else here in this Azoor family, it's comforting to read messages here. It helps. I just wish people without Azoor would read these messages too and so don't jump to conclusions. You know what, doctors put me through various blood tests, even on syphilis, which of course turns out negative. Someone said "May I ask a harsh question? did you sleep with a western guy during your stay in Florida?"(I spent one year in UF as a visiting scholar)


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Yes, it's great that doctors are open with us. I'm sure it's really hard for them too. They've been trained to diagnose, treat and cure, so putting a name on the condition feels like progress, and sounds better than "i haven't the faintest idea what's going on." Having a name makes patients feel better too. If you tell your friends and relations that all the doctors you've seen haven't got a clue what's wrong they'll want to send you on a wild goose chase to find someone who does. Much better to say - "It's called azoor. It's very rare. Doctors don't know much about it." BTW Cynthia, one of the big worries with a diagnosis of azoor is "Am I going to go blind?" Of course we can never predict the future, but I have never heard of anyone going blind from azoor.


Re: AZOOR



I am grateful that the doctors don't hide their confusion and disagreement from us. I hope they are smart enough to understand that we do understand. My only guess is that this is the fate of having a rare disease. Yes, it must be that.


Re: AZOOR



I sometimes feel that most doctors have just given up and moved on to other things. There are so few doing long term followings of patients!!! That said, I do go on - with or without them. Thank you for reminding me to keep a good sense of humor about it all.

Thanks again for listening and understanding.


Re: AZOOR



Keep your sense of humour Cynthia! Black humour is one side effect of azoor that doctors may not have noticed because they're too busy concentrating on our eyes. They may end up deciding that there are so many variants of azoor that figuring out which is which will keep them busy for decades. Meanwhile, for those of us stuck with azoor, or something like azoor, life goes on. So what to we do? Curl up in a ball under the bedclothes, or march on? Not much choice really.


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I find it helps my perspective to look at some of the doctor's questions about AZOOR. There is a pile of gunk that rings a mature, active lesion. What is this pile composed of?

Azoor Complex and AZOOR. What a ball of confusion for a lot of doctors. Other diseases are diagnosed instead of AZOOR. And, AZOOR is diagnosed instead of other diseases!

What will the next chapter of this mystery hold?


Re: AZOOR



Hi Rong - I'm a visonaware peer advisor with azoor, so I know what you're going through. Even before we're diagnosed with azoor it's worrying because the visual effects are so strange and the doctors don't know what's going on. And once we're diagnosed we're none the wiser and the problems continue. It's tough. The usual pattern seems to be that the azoor settles down, sometimes our sight even improves a bit, after about a year. Also we kinda get used it. I think once we figure that we're probably stuck with it, it starts to dawn on us that we're still the same smart, interesting people we always were, our family and friends still love us, and there's lots about life we can still enjoy. It helps to make a list of all the things you can still do - it's surprising how long the list turns out to be. Don't blame your diet, and don't blame yourself. Azoor happens. No one knows why. The main thing is to be kind to yourself. Eat a healthy balanced diet, get regular exercise and do the things you enjoy doing. warmest best wishes.


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Hi, Cynthia, you are right about having a rare disease is hard to undertand as disease itself. But we're all still trying very hard to understand it all. Personally, i can only accept what i can comprehend. In China we have an old saying that long-term patient grows into a doctor. You seem to have read a lot and know far more than i do. From what you just mentioned about acute autoimmune retinapathy, it might have been triggered by our immue system. My last week's blood test indicates that my white blood cell count is a bit too low, Eosinophilic and basophile granulocyte are low too. Could that be the reason?
I aslo use see long hours of computer screen, could that be the trigger?
My doctor says there's nothing you can do but wait for self-healing. But it's not in my nature to sit and worry and wait. Just have to do something. I start to change diet, I must have eaten wrong,Today i cooked Millet and Yi Ren porridge (Yi ren is a chinese seed-bearing grain, Latin name is Coix lacryma-jobiL. Some people call it seed of Job's tears.) They are said to have Vitamine Bs and good for spleen and reduce edema. For tea I start to drink Chrysanthemum and chinese wolfberry which are said to be good for liver. I aslo start to take a Pesudo-ginseng tablets, good for blood flow.
I hope this food therapy will work.


Re: AZOOR



I think that finding that you have a rare disease is as hard to understand as the disease itself. It is like being alone on a desert island.

Doctors are still trying to agree on the finer points of AZOOR. There is a lot of strange stuff posted by well meaning professionals such as Pseudo Retinitis Pigmentosa, or Acute Autoimmune Retinapathy. I have spent hundreds of hours reading everything I could find even remotely related to AZOOR.
I am now considering donating my eyes for research when I pass.


Re: AZOOR



I live in Shanghai, China. I suffered sudden vision loss July 7, see dark spots in front of left eye, particularry worse in brighter natural light, and slightly better in darker room light. So weird and scary. and after a month's tests, finally diagnozed as Azoor. It's very rare in China and I'm glad to find people like me here, but also sad that there seems no cure so far. Traditional Chinese Herbal Medicine tends to associate eye problem with liver problem or blood issue, which also seems a long shot. But if western medicine understands so little about Azoor, tradional Chinese medicine seems my only option now.
My job requires lots of computer work, this is really distressing. Hope things get better.
Thanks for reading my post. best wishes for you all.


Re: AZOOR



Hi Cynthia - I'm so glad you've found us - welcome to to discussion! Your story is an inspiration. How clever to think of drawing pictures of what you're seeing. It sure beats having to find the right words. The best I could come up with was "visual static" or "like a badly tuned TV set" but the response from health professionals was usually just a blank stare. And well done for making sure you're well informed about possible treatments. Sounds like you're doing everything right to look after yourself and to make sure the specialists take you seriously. Thanks for making contact - clever tips for coping with azoor are always very welcome here!


Re: AZOOR



I was diagnosed with AZOOR in 2014 after 9 months of tests and waiting. I want to thank you all for softening the blow. I took some paper and colored pencils and drew what I was seeing. It helped my general opth take me seriously. When the neuro opth gave me the diagnosis, my general opth told me that he remembered studying AZOOR for a test in school and then promptly forgot about it.

I also have Graves' disease. I had the radiation and take 112mcg levothyroxine Tu, Th, Sun. And, 100mcg M, W, F, Sat. Doctors have been studying Graves' since the 19th century and still don't know the trigger other than genetics. I won't be doing prednizone etc because I don't have a thread to surpress. I have read that the interaction between levothyroxine and prednizone is in the range of "why don't they just shoot me?"

I think it is important to check you blood pressure often if you take supplements. Some can send it sky high.

Well, thanks for listening and giving so much. Calm and happiness to you all.


Re: AZOOR



Hi Juls - it's good to know that your vision loss has not progressed. I do hope things continue to go well. Unfortunately it'll be impossible to know whether the things you are taking are making any difference because azoor can improve or stabilise or deteriorate regardless of what we do. Oh well, I'm sure you're discovering that there's lots about life we can continue to enjoy whatever happens with the azoor. Best wishes and stay strong. Lynley


Re: AZOOR



Hi All-
Just had my second Vision Field Test and my vision loss has not progressed - great blessing. Last March I aggressively started to add anti-inflammatories to my daily regime. Don't know if that has kept my peripherial vision loss at bay, but I'm continuing with them, as the "lightning bolts" that constantly fire through my oval grey spot have lessened. My doctor thinks that the white dots under my retina are inflammatory spots, and since prednisone did absolutely nothing - I went the natural route. Here is what I take:
Oil of Oregano, Ginger root, boswellia, Turmeric, CoQ10, Vit. C,
Omega 3, Zinc, Folic Acid, Zyflamend. I know everyone's different, but I'm encouraged. Plus drinking 8+ 8 oz glasses of water a day, 1200 calories/day, 3-4 week cardio/strength training.
I'll see if there is a difference at my next test in Sept. Prayers and positive thoughts for everyone! Juls


Re: AZOOR



HI AL
That's worrying news. I guess there'll be lots more tests to come for you, but hopefully they'll come up with some answers. In the meantime pamper yourself, treat yourself to a special outing. Have you figured out what works for you? What takes your mind off all those questions spinning around in your head - even for a little while? What makes you laugh? Treat yourself - you deserve it!


Re: AZOOR



Hello All
My visit to the eye clinic did not go as well as I hoped , i have considerable sight loss in my left eye and no plan as of yet , the black blob is taking over and the constant lightning show or blinking lights is becoming more than just an annoyance , its starting to grind on me. But on an up note my doctor is so intrigued by this that i may be a priority , i will keep you updated


Re: AZOOR



Hi Liz and Karen
It's astonishing how many people have this rare eye disease! Best wishes with your project Liz, it's an important step towards getting a handle on azoor. Here's hoping it's the start of something big.
I'm glad you've kept your sense of humor, Karen. i think, like you, my vision in low light has deteriorated - but do any of the tests they bombard us with actually measure that aspect of our sight? I presume some tests give a few clues, but I've never had to look at the eye chart in dim light, which seems to me a useful low tech way of giving the experts an idea of how azoor affects our vision. Do let us know how you get on at the Casey Eye Institute.
best wishes, Lynley


Re: AZOOR



Hello everyone!

I wish I had found this 9 years ago! I was diagnosed back then and was terrified at the time because it was so rare and unknown - I was 31 at the time and had just gotten married. I developed a blind spot almost overnight as I was recovering from ACL surgery. I went to the eye doctor immediately and they did a field test to confirm that yes, indeed I did have a blind spot. The flashes of light led them to request a MRI of my brain. As I hobbled over on my crutches to schedule this I looked at the sheet of paper I was to hand to the scheduler and it said "possible brain tumor or MS". And of course this was the first I was hearing of these possible diagnoses. Nice! When my brain was pronounced "unremarkable" -I tried not to be offended :) - I was bounced around to numerous doctors and finally found one who wrote Uveitis and this bizarre word "Azoor" and a "?" on a referral sheet to the Casey Eye Institute at OHSU in Portland. Here Dr. Peter Francis diagnosed Uveitis and Azoor in both eyes. Basically flashes, floaters, and a blind spot in each eye with significant difficulty in low light - everything gets flat and I actually can't distinguish stairs and have bit it on numerous occasions.

I actually leave tomorrow for the Casey Eye Institute for a follow up and to see if my test results have changed. My low light has gotten a bit worse. I have not had any follow up tests since my first visit. (Mostly because things hadn't changed much and the thought of those tests makes me want to cry). 3 hours with your eyes clamped open and wired contacts and your head in an orb that flashes into your clamped open eyes? Seriously, I feel like I could withstand almost anything after those tests… but my eyes are written up in some English medical journal since the Uveitis/Azoor combo is so rare so I guess that is something.

Those of you who mentioned you share these conditions (Uveitis/Azoor) do let me know if you would like to connect separately.

I hope to learn about any new advances on the Azoor front and will be sure to post them here if I do.

All the best to you,
Karen


Re: AZOOR



Hi Lynley and fellow AZOOR sufferers
I was diagnosed with AZOOR in 1992 at Moorfields by Prof Alan Bird.
At the time it was my left here and it did take a very long time to figure out.
Luckily I had Moorfields as my first stop.
Ten years later I started losing sught in my right eye.
I now live in Toronto Canada.
This disease was virtually unheard of 25 years ago and now most retinal eye practitioners I have met in North America are familiar.
It's hard to read everyone's messages and difficult journeys as they resonance to us all in some way.
My mother in UK was inspired to start the azoorsociety.org
With our own money we have just set up the website. It's very early days but we've done it so that Azoor patienrs can connect worldwide and hopefully work towards research and community,
We want to set up the first patient day at Moorfields eye hospital in London and need people to step forward, it's an opportunity to meet other people diagnosed but also meet doctors in the field,
My dream would be that this starts in all countries.
Lynley you are amazing and clearly have such a wonderful heart.
I wish you have been there when I was 22 yrs old.
I tried sending a post last week but it didn't work.
Please contact me directly at theazoorsociety@gmail.com if you would prefer.
Best wishes and happy hearts to you all
Liz Upchurch
Theazoorsociety


Re: AZOOR



Hi Al - it sure is a long road to a diagnosis of azoor, and once you're there it's hard to know what's normal, but there could be another explanation for your light sensitivity. It's not unusual for people who develop any sort of eye disorder to start developing cataracts at the same time. Cataracts can impair your vision and increase your light sensitivity. And they're treatable! It's worth asking an optometrist if you're getting cataracts. Some of us with azoor have found that ophthalmologists are so busy figuring out what's going on with our retina that they don't think to mention that we're developing cataracts too, so it's worth checking out. Good luck. Lynley


Re: AZOOR



well here I go , My name is AL , I was diagnosed with Azoor last July at the University of Minnesota , before that i suffered through alot of tests including spinal taps !! The Doctors at the U said there was no known cure so i didn't pursue any treatment , its gotten a bit worse and my sensitivity to light seems to be increasing , is this normal ?


Re: AZOOR



gb30 - here's an afterthought - it may be worth asking your doctor if your eye pain could be caused by sub-acute glaucoma. I'm sure you've been checked for the most common types of glaucoma - these cause an increase in eye pressure that is picked up whenever eye pressure is measured. But there are a couple of rare forms of glaucoma in which the eye pressure is usually normal but can go from normal to high very suddenly, and this can cause pain. In acute glaucoma the pressure stays up and is extremely painful. The affected person rushes to hospital and the very high eye pressure is picked up immediately and dealt with. My sub-acute glaucoma wasn't picked up for a long time because it came and went in short bursts. My eye pressure went up, did some damage, and then went back to normal. Then one day I surprised the specialist by having very high eye pressures, which he immediately treated. We realised this had been going on for a while. I'd had many short periods of blurred vision that came and went and, because all the tests showed I was a picture of health, they defied explanation until an eye pressure surge happened to coincide with a visit to the eye specialist. I didn't experience any pain, but I'm sure it's theoretically possible to experience pain with sub-acute glaucoma if the pressure goes high enough. It's probably worth asking your doctor about.


Re: AZOOR



There's a conscious breathing technique for coping with random bursts of pain that can help a lot, partly because slow, regular breathing slows the heart rate and reduces anxiety, and partly because concentrating on your breathing helps take your mind off the pain. My husband used it during a very nasty bout of shingles when bursts of excruciating pain came at irregular intervals and pain medication didn't help. I was amused to realise that it was the technique he'd learnt so he could coach me through the labor pains during the birth of our first child. It's worth a try.
I agree - soaking in a spa is wonderful - a great way to relax! Giving yourself a spa treat sounds like a great idea.


Re: AZOOR



Hi Lynley, thank you for your understanding/thoughtful advice.

Yes, Im glad in so many ways I think I know what this finally is (in fact almost certain this is it), but thats met with the sharp realisation that this is seemingly incurable & the damage done is irreversible plus very likely to get progressively worse.

For some reason mine does seem to be particularly disturbing and has never let up over the years. I guess Im just unlucky :)

Im trying to think of advice I can offer to anyone else based on my experience over the years but I really haven't come across many things that help ease the pain, disturbance or distress caused by azoor.

I think the only 2 things Ive ever noticed help ever so slightly is 1) Enjoy the sunshine when its a really bright sunny day. That does help sooth my vision ever so slightly, the light (has to be very bright natural light) seems to break through the photopsias/swirls and provides a brief sense of relief/normality. I often think I should emigrate to a sunnier climate :) And 2) Swimming pool/spa environments help me too. I think my most chilled place in life is sat in a spa jacuzzi - cant live in a spa though :)

I was prescribed Pregabalin/Lyrica a while ago to try and relieve the pain but it really doesn't help me, all it does it make me sleepy & stupid :)

I'd be really grateful to hear from others if they have ever come across anything (medication or other) that helps with pain relief associated with this? Im not even sure why I get so much pain as many don't seem to report quite as much pain as I seem to experience. Finding something to help with the pain would be a huge step forward for me.

Hope everyones ok!


Re: AZOOR



Dear gb30 - thanks for sharing your experience. It sounds absolutely horrible. It's good that you have an understanding doctor who may be right - you may have azoor. I'm sure getting a diagnosis will help your peace of mind - even if very little is known about azoor, at least you'll have a name for what's happening to your eyes.
It's rare for people with azoor to actually get better. The condition may stabilise over time but that doesn't mean that our vision improves - it may continue to deteriorate, often erratically. The main thing is that the attacks tend to be less frequent and less alarming. You will see that people on this message board who've had azoor for a while sound far less concerned about it that people who are newly diagnosed. You've had longer than most of us in that frightening period where your eyes are doing bizarre things and no-one can tell you what's happening and what the future might bring. Once you get a diagnosis - and even if it's not azoor, this is true of some other eye disorders too - you have to get your head around the reality that there's no treatment and no cure and no prognosis. This news is very hard to swallow, but sooner or later those of us with azoor realise that while azoor has made our life miserable so far, we're not going to let it ruin the rest of our lives. There's still a lot we can do and enjoy - so let's get on with it. I'm glad you're continuing to exercise. Think about all your hobbies and interests that take your mind off your visual worries for a while - and do them. It's a tough time for you, but you're doing well, and you're not alone. Stay strong, Lynley


Re: AZOOR



Hi all,

I'm really sorry to hear about everyone's struggles with azoor.

I'm an early 30s male from the UK and after 10 years of poking, prodding, test after test, it looks like I'm about to be diagnosed with azoor.

When I was 20 one day I suddenly noticed something wasn't right with my vision in one eye and since that day my life has never been the same. That night/weekend and following week I can only describe as hell as I watched my vision in my eye deteriorate. At that stage it started as a patch of vision that went really hazy and was forming a large blind spot in my peripheral vision. Also at that point the feeling of blindness and the intense eyeball pain started.

Soon after I began to notice flashing lights moving into my vision from my far peripheral. I had many many visits to eye specialists and consultants. None of which could say anything other than your eyes are perfectly healthy.. Stop worrying and get on with your life.

Over the next year or two the symptoms didn't stop nor even slow down and gradually the flashing lights came further into my vision, the blind spot enlarged somewhat and I started to see a horrific oscillating pattern of flashing lights that literally never stopped appear in my vision around my blind spot.

The blind spot was one thing to deal with but the crazy intense never ending oscillating swirly 'tribal-like' pattern was debilitating. And the pain that set in once this started was unbearable.

Many more Drs apps, tests inc. MRIs, VEPs etc etc didn't show anything at all.

Fast forward 10 years to today and I've been passed from pillar to post.. Eye docs say it's a neuro problem and refer me to neuro, neuro say its not a neuro problem and they have no idea which left me clueless whilst I'm watching my vision literally be eaten alive as this swirling oscillating pattern creeps further and further towards my central vision, dragging an ever expanding blind spot with it.

The pain is unbearable and for 9 years now I've never had a moments rest from this darn thing in my eye that seems to go on and on and on. The more intense the swirls/oscillations, the more pain I'm in. It's a horrible cycle. I can barely think I'm so saturated with eye and surrounding orbital pain which always leads to intense strain headaches based on the crazy things I see which I have absolute no control over - I'm literally along for the ride!

Over the past few years I have noticed a pattern... I feel poorly/get ill, can feel my vision is rapidly deteriorating, lasts about 2 weeks then slowly start to feel a bit better but my vision has taken a huge hit each time. This seems to happen quite regularly and I'm literally watching my vision be eaten away or I'm experiencing the effects of my retina slowly dying.

I love to keep fit but exercise makes this condition 100x more difficult to deal with, sometimes I think I'm actually dying or something my vision goes so crazy and the pain goes off the scale as I exercise. Exercise is something I refuse to give up though so I endure the pain most days but I certainly don't help myself by continuing to run/exercise.

Other things which really affect me are stress and sleep. Those two are vital in trying to cope/manage with this. If I'm stressed or can't sleep I suffer big time and often it takes weeks to try and get back on an even keel.

And as with most others on here light.... Oh my days.... Light kills me!! It literally ruins my life. Light = pain and intense oscillations. Rarely I can find a nice combo of light/dark that helps sooth the disturbances a little but it's only ever a little and those occasions are rare.

I'm not entirely sure what on earth is happening to my vision but my new Dr thinks it's azoor and we are waiting on tests to support this theory. Personally, after 10 years of suffering this horrendous condition I have researched and studied just about everything that could be causing my problems and azoor (or related sub-condition I.e. Aibse) is the first condition I have come across where everything just lines up and makes sense. Everyone's stories are so similar to that of my own and everyone's symptoms are literally like for like of my own.

I have absolutely no idea where this leaves me, whether I'm going blind, how long I have left with my vision or what but I'm certainly at the stage where I'm struggling to come to terms with it all and I struggle daily to see what's happening to my vision. And the thought of this starting in my other eye is consuming me especially as I'm seeing signs of it starting which is heartbreaking.

It's interesting to note a lot of people say they don't have many relapses or they have just a few attacks but they often get better? I seem to be the opposite :( I seem to be getting regular attacks and my vision is gradually dying- peripheral into central :( I just wish there was something that could be done to halt its progression (towards my central vision) or at least stop the constant swirling oscillating patterns which literally drive me stir crazy and saturate me with awful pain. I just need a break :)

Sorry for rambling on but thought i'd share my experience :)


Re: AZOOR



Thanks Lynley,
I have been eating well, adding anit-inflammatory supplements to my smoothies, good multi-vitamin, trying to sleep more (prednisone messes with that, some) and walking for exercise. I will chime in to note of any changes in my vision, as a result of the 2-3 week round of prednisone. Thanks for the supportive conversation.
Juls


Re: AZOOR



Hi Juls
This is Lynley, I'm a peer advisor with azoor. People on this group have different views on health supplements, so it's important you make up your own mind and do what you feel is best.
Mainstream medicine can be very frustrating when it doesn't have all the answers. That is usually because nobody has all the answers, and doctors have a duty not to promise more than conventional medicine can deliver. The fact that you want to take positive steps to help yourself tells me that you're a positive, active sort of person - it's not in your nature to sit around feeling sorry for yourself, right?
Here's my view on supplements, which you must feel free to ignore - like I said, it's your decision. I think it's safe to say that supplements won't do any harm, but they can sometimes make life more difficult. First, because they often promise more than they can deliver, so you can end up spending a lot of money on something that makes no difference in the long run. Second, worrying about whether the supplements are working or not (am I better today than I was yesterday, or worse, or the same?) can make you more anxious than you are already. Third, after talking to alternative practitioners some people end up worrying more about their health than they need to, and feeling pressured into taking supplements they don't need and which will make no difference to their health.
I don't know of any research into supplements for azoor, but there was a big study in the UK in 2006 on the relationship between diet, multivitamin supplements and shingles (for which the main risk factors are age and immune deficiency). This study found that eating more than three pieces of fresh fruit a day was more protective than taking supplements - and of course fresh fruit tastes better!
I hope your azoor settles down soon. You are fortunate to have been diagnosed so quickly. It may not be the end of your ups and downs with azoor, but it's great you've got a doctor who knows what she's dealing with. Best wishes, Lynley


Re: AZOOR



Hi, I'm Juls,
I'm 51 and was just diagnosed today with AZOORS. In January 2015, I noticed in my left eye, that an oval spot around the 9, 10, 11:00 area (peripheral) was a gray area that I could not see through, and was filled with about 50 hairline size white lighting bolts - that just continue to fire away. I went to one Ophthalmologist who couldn't diagnose me, but had the smarts to send me to someone who could. After a bunch of optic nerve, retinal pictures (with and without dye) vision field test, brain MRI and a ERG or Electrophysioretinal gram, my Doctor told me today, that it is AZOORs. She has read where pednisone has helped some and not others. She gave me a script to start tomorrow, but I'm hesitant. It is short-term, so I'll probably try to see if it makes a difference. However, it won't make me stay on them long-term, so now I am going to look up natural supplements to boost immune and decrease inflammation. Has anyone gone to an endocrinologist to see if there is any chance of a cause and affect that way? Thanks - My prayers for everyone that it doesn't progress.


Re: AZOOR



Hi Jocelyn
Azoor usually takes a long time to diagnose because the diagnosis is normally arrived at by a process of elimination. It makes sense to check for common eye disorders before looking for rare ones, and that takes time. An added problem with rare disorders is that they're poorly researched and poorly understood so it probably takes a while to decide whether the test results are, or are not, evidence of azoor. There is research going on into azoor, but its not as easy as researching common disorders where finding lots of cases isn't a problem. However I'm sure the frontiers of knowledge are moving forward and one day we'll have a better understanding of the causes and effects and long term outlook for azoor.
I can remember having a lot of variation in blurriness during the day in the early stages of my azoor, but it does settle down after a while. When I think of all those strange visual disturbances I used to get, one of the biggest challenges for me was - how on earth do I describe it to the doctors? They often looked baffled and scratched their heads when I told them what I was seeing. Which reminds me of another reason why azoor takes a long time to diagnose - it doesn't show up on most of the usual eye tests. We often have normal, or fairly normal, visual acuity, and our eyes look fairly normal when the doctor looks into them. It's only when they do the more specialised tests that they realise there's something strange going on.


Re: AZOOR



Hi Lynley,

Thank you for responding so quickly and the great advice.
Do you know why it takes so long for doctors to diagnose AZOOR?
I find that my blurry vision gets worse and gets better within the day. It goes through its waves. It will be very blurry and then back to as if my vision is normal. Is that a symptom anyone has experienced in the initial stages of AZOOR?

Thanks


Re: AZOOR



Hi Jocelyn - Yes, there is a support group here, and we all know what you're going through. I'm a peer advisor for Vision Aware. I developed azoor (or something like azoor) five years ago. As you will see from the posts on this message board, the first year is definitely the worst - all those tests and all that uncertainty. For now, we don't know whether you have azoor, you may not find out for a while. If it is azoor, or something like it, there's a good chance that it will stabilise in time. I have never heard of anyone going blind with azoor. In the meantime you'll probably have more tests. The uncertainty may last for a while, so do look after yourself. Make a list of all the things you enjoy doing - all the things that help you relax - and do them! And don't forget the basics - eat a healthy balanced diet with lots of fresh fruit and vegs, get regular exercise and plenty of rest. Take care, keep in touch, Lynley


Re: AZOOR



Hi everyone,

I am a 22 year old female living in NYC. I've had glasses and contacts every since the 5th grade. I started having blurry vision in my left eye a week ago. I went to the optometrist thinking it was just an astigmatism. It turns out it wasn't and I was referred to a retina specialist. The retina specialist ran a bunch of tests and he thinks I may have AZOOR. I am very scared. It is comforting to know that there is a support group here. My main concerns are:

Will my vision loss get worse in my left eye?
Will this happen to my right as well?

I know every case for every person is different but any help and advice would be greatly appreciated.

Thanks, Jocelyn


Re: AZOOR



Hi Katherine
Azoor sure is frustrating, but now that all the tests are over you'll have more time to get on with life. I'm sure that "just sort of trying to forget about it" is the best thing you can do - along with eating a healthy diet with lots of fresh fruit and vegetables, taking plenty of rest and regular exercise. Best wishes, Lynley (peer advisor)


Re: AZOOR



You may want to read the article that we have posted on AZOOR on VisionAware: http://www.visionaware.org/info/your-eye-condition...


Re: AZOOR



Hi everyone,

I was just diagnosed with AZOOR last month after 3.5 years of countless tests, procedures and medications. I've been on more drops that I can count, had IV steroids to the arm, 2 steroid injections to the eyeball and oral steroids; none of which did anything. Finally, during this last visit I finally received a diagnosis. I thought this would make me feel better as I was hoping to read or find things that could help but actually, receiving this diagnosis has been quite the opposite.

It appears that AZOOR isn't well-known at all, they have no idea why or how it starts and no way to tell if it will progress or the other eye will follow. Can anyone provide some insight on what they're trying, how to cope with this, etc? Currently, I've gone off the drops and I'm just sort of trying to forget about it.

Thanks so much! It's so nice to see that so many other people are experiencing the same thing. Best, Katherine


Re: AZOOR



Dear etimotius
The biggest problem with azoor is that it’s poorly understood, and it affects everyone differently. We humans are programmed to go looking for answers, and for most medical conditions there are answers to be found, but there are no reliable, well-understood answers for azoor.
This means that learning to live with azoor isn’t just about learning to live with a rare eye condition, it’s about learning to live with uncertainty - and that’s even harder.
The doctors say your sister might have azoor. Do you know whether they have a firm diagnosis? Whatever the problem is, it is not straightforward, and anything I say about azoor in general or my own case in particular may not apply.
I haven’t had steroids, but some people with azoor, or with something like azoor, have been helped by steroids. My peripheral vision is slightly affected, but that could be due to a family history of glaucoma. Like I said, everyone’s different. There is no known cure for azoor. In any individual case when the question is: What is going to happen? Is the sight of the person I care about going to deteriorate, or improve, or stay the same? The answer is: We don’t know.
So let’s go back to that other problem - living with uncertainty. While the treatments and tests continue you’ll both be on a roller coaster of hopes and fears. Do whatever you need to do to comfort and support each other. Go for walks. Listen to music. Go to movies. Talk. Get angry. Shout. Cry. Do whatever helps you to feel calm and relaxed for a while.
The most important thing to remember is that your sister is, and always will be, the same lovely person she always was, with the same capabilities and potential she always had, regardless of what happens to her sight. Right now this horrible eye disorder is taking over both your lives. You’re most desperate wish is that you’ll wake up one morning and find it was all a bad dream. The idea that it isn’t a bad dream, that it’s not going away, seems too hard to bear.
Believe me, everyone who has azoor says this: once you’ve accepted that you’re stuck with it, the fears fade into the background and you get on with enjoying life. Meanwhile, stay strong, Lynley


Re: AZOOR



Lynley, thank you for your response. May I ask, about your AZOOR condition? Did it affect your both eyes or only one eye? Did it effect your peruvial view? You explained the condition will settle down and it will improve a bit. Does it mean you will be able to recover your loss vision a bit? My sister can't see now with her right eye. Is it possible that she will gain her vision back on her right eye? Her doctor in singapore said that he will treat her with steroid. Did you receive the same kind of treatment? Thank you for your help


Re: AZOOR



Dear etimotius@gmail
My name's Lynley - I'm a peer advisor for Vision Aware. I developed azoor five years ago so I can relate to your anxiety. The first year is a very worrying time because azoor takes so long to diagnose and there are so many unanswered questions swirling around that possible diagnosis. Rest assured you are not alone. Everyone with azoor has gone through this period of bewilderment and worry. It doesn’t last forever, but it’s tough while it does last. Unfortunately azoor is so rare that not much is known about it. However we do know that for most people azoor settles down after a while. It might even improve a bit. I've never heard of anyone going blind from azoor. If you sister does have azoor the specialists will probably want to do more tests to eliminate other possibilities. I think you are wise to have sought advice in Singapore. You may be feeling helpless, but in fact you’re being a wonderfully supportive sister and that’s the best possible thing you can do. We don’t know what’s ahead and it’ll be tough for both of you for a while, but the love and caring you share with your sister will carry you through. Eventually the clouds will start to clear away and patches of blue sky return to both your lives. Stay strong, Lynley


Re: AZOOR



I'm looking for information about AZOOR. About six months ago, my older sister who is 45 years old was diagnosed with Rentitis Pigmentosa. She lives in Indonesia which we have very limited of retina specialist. Just two weeks ago, when she had her eyes check-up in Singapore, she discovered that she had lost her vision almost totally on her right eye. This doctor told her that she might have AZOOR instead of RP. They took her blood and we are waiting for the results. I can't really find a lot info about AZOOR. I'm really concern about her. Now she only has her left eye and her left eye peruvial view is quite limited as well. I'm looking for any information about AZOOR. Thank you


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Just a quick update for those of you struggling with Azoor. The progression of this infuriating eye condition appears to have slowed for me. I now have glasses for reading and for watching tv as both my near sight and long sight have been affected. The glasses help with the natural deterioration in eyesight expected for someone of my age. They do not help with the other issues created by Azoor. Once again there is blood leaking into/out of the macula (i'm never quite sure whether it's leaking into it or out of it). Further injections in my eye are required. I really don't want this (even though I've had it done twice before and I know it doesn't hurt), but if I don't have the procedure done, it will cause permanent damage. This post seems to have taken on a negative tone which is not my intention. Things can be done to help in certain ways. Better lights for reading, screen magnifiers for computers, magnifying mirrors for applying make up and so on. Don't struggle if you don't have to. Yes it's frustrating, yes at times it can be scary but once you accept that you have this condition and you take steps to make up for any loss of vision (where possible), then things become much easier. Lynley is a mine of information and a huge help when you need to keep things in perspective. I do have concerns that Azoor is the go to diagnosis when doctors have no real idea what's wrong with your eyes so don't just accept their diagnosis. Get a second or a third opinion if you feel it is necessary. Steroids didn't help me but I think some doctors have had some success with them. Good luck to you all and as Lynley says, you are indeed the same wonderful, amazing person you were before your vision went blurry. xx


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Dear agupta - your story is one that everyone with azoor can relate to - all the confusion over what is happening, all the tests, all the treatments. Months later all we really know is that our brains are fine. Hooray!! We're still as smart as we always were. We just can't see as well. And there's something wrong with our vision that no one can explain. Your doctors seem to have tried everything but they're dealing with a mysterious condition that comes in many different varieties. I've never heard of anyone going blind with azoor, but there seems to be no effective treatment and no cure. The main thing to remember is that you're still the same interesting and worthwhile person that you were before that morning when you woke up with blurry vision. If you're stuck with azoor - well, what are your options? Give up, or march on? Of course you'll march on. We all do. Take care and be strong, Lynley


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Hi All,

Sharing my experience of situation which still exists below. Your suggestions/advise/experiences are most welcome and will be much appreciated.

One regular day, I woke up at my usual time in the morning to realize that there is some blurry vision I've got. Realized only once I closed my eye one by one, and there it was the right eye with blurred vision. I still did not think its something serious and continued with my day coz with both eyes open together, it wasnt a problem at all. On my way back from work, i got my eyes checked up for any change in number, but it was intact. When this did not go away till late night that day, i told my folks about it and next day we visited an Opthalmologist, who referred me for an OCT and visual field test. OCT showed nothing significant however, there was a significant loss of field in my right eye - temporal and nasal field. Post this, he immediately referred me for an MRI of the brain. Fortunately, there was nothing significant in the reports. I consulted a neurologist at AIIMS(biggest and best medical institute considered in INDIA). the doctor after going through the reports of the tests done so far doubted for toxic optic neuritis and also recommended for various blood tests. the doc doubted that it could be a stroke and put me on deplatt immediately. They again got an MRI/MRV done along with Goldman perimetry field test and VEP. Field test and VEP showed irregularities, Vit B12 and Vit D were low and i was asked to stop taking deplatt. I was then put on 3 day Intravenous Steroids dose, on completion of which, there still wasn't any improvement. The doc finally concluded that it is intracranial hypertension and put me on diamox, and advised that the damage has been done and might be irreversible, however it should not increase. I then had 10 vit B12 injections every alternate day and since then consuming 1 tablet of Neurobian forte every day and D-rise once a week. Till now, we moved forward knowing that its a neuro problem, untill one day we consulted another renowned doctor(a neuro-opthalmologist) at Sankara Eye Hospital in Ludhiana, whom I found after a lot of online research and he finally gave me an appointment. It was a 6 hour long drive from Delhi and we left. He conducted several tests and went through all my previous reports and suggested very confidently, that this problem is not related to neuro at all, and the problem lies within the eye. He concluded AZOOR, but recommended ERG and EOG for confirmation. We left from Ludhiana a litlle relieved as we had been told that the problem is not related to neuro. I got these 2 tests conducted at Shroff's eye centre after consulting and sharing the entire history with them. The doc thr told me that the results show significant irregularities however, they were also not clear what exactly it was. They said that the 1 of either cones or rods is not functioning in my right eye hence the prob. they also confirmed that the problem is not neurological (just to mention, my central vision is fine, but problem lies with the field and I've also eventually lost the color vision in my right eye). Total time to the problem till date - 8 months
No Improvement
Sometimes feels that it has worsened.

Thats the history till date. tomorrow I am visiting the opthalmologist whom I had visited 1st when the prob started as the doc is known he is insisting on visiting him.

will keep you all posted. Would love to hear from people with similar cases who can show me some path.

"The world is beautiful, take care of your eyes."


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Dear Muna
At this worrying time you can be really proud of yourself for your determination and initiative in going in search of the best possible medical advice. And it's great to know that you have such a supportive family - that's something everybody needs, but not everybody has. Stay strong, Lynley


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Dear Lynley,
thank you so much for your reply and advice it means a lot, I will take it into consideration for sure
you are absolutely right my fear started when my doctor stated "possible" although they are using advanced machines for the tests..

yes I am taking family members who are very concerned to help with the decision of treatment
and today I contacted several hospitals around the world to seek advise and will post updates here

thank you again dear
regards
Muna


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Hello Muna - it's Lynley here. I'm a peer advisor for Vision Aware. I'm not someone who can give medical advice - just someone who has azoor and can talk to you as a friend who understands how frightening it must be for you right now.
Muna, from what you're saying it sounds like the doctors aren't sure what your eye problem is. It may be azoor. It may be something quite different. With all this uncertainty I think you're very wise to seek a second opinion. I don't know who to recommend. One way of finding medical specialists interested in azoor is to enter "azoor review" in the search engine of the pubmed website. That will bring up some recent review articles by medical groups who are studying azoor. If you click on "author information" you can find out where these specialists are. If there's doubt about the diagnosis, even with a second opinion, you'll need to question the doctors carefully about any treatment they suggest. If they're not sure what the problem is, why do they think this treatment might work? If they're not sure whether it will work you'll need to weigh up whether or not you want to try it. t's your sight, so ask all the questions you need to ask, and make sure you get all the answers you need (and don't be surprised if some of the answers are "we don't know"). Can you take someone with you? A friend who can come to the consultation with you and talk it over with you afterwards? With so much to take in, and so much to think about, it probably will be helpful to talk it over with someone. I'm too far away to do more than respond from a distance (New Zealand), but do keep posting. Let those of us on this discussion board know what is happening for you - we can always give you support, and maybe some useful suggestions too. Warmest best wishes.


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hello, my name is Muna i am 32 from OMAN and i have been having symptoms of Azoor since 2007 -
i wasn't diagnosed until recently after trying for the past few years injections (Avastin and steroids) - which worked well on preventing further damage (i have lost central vision in left eye and have several blind spots in the right eye) - however since over a year ago Avastin was announced to be out of the market by medical board and my Doctor had alternative drugs discussed with me which sounded to be similar only more expensive - in my last visit a week ago i expected to have one of these injections however my doctor advised this is a possible Azoor and i need to consider immunosupportive treatment (prednisolone, mycophenolate etc.) i am finding it hard to decide on this option in a matter of a week especially the doctor did not confirm the diagnosis and stated it as possible Azoor- i trust my doctor however with the little vision i have left i need to be careful on decisions of treatment

i am considering going aborad for a second opinion - found a hospital in Spain - (note: my treatment started from London Moorfields hospital and my follow up is with the same hospital in Dubai)

if anyone can suggest Doctors i should visit please do contact me - i am working on getting travel documents prepared this week and i am prepared to travel anywhere needed to get second opinions

also if anyone has a good doctor whom i can send my reports to immediately i would highly appreciate your support

my email address : muna81@hotmail.com


with much regards to everyone who is experiencing the same and the families supporting their loved ones

Muna


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Hi lizziebee & stenoqueen
Lynley here - I'm a peer advisor with VisionAware. I was diagnosed with azoor three years ago after a year of tests, so like everyone else on the message board I know what you're going through. You're right. It is frightening - all those unanswered and unanswerable questions - made more complicated by the fact that no two experiences of azoor are quite the same. As for trying to explain what we can and can't see, that we're blinded by too much light, or not enough light, or both, it can even be a problem when the light is just right because that's when our friends notice that sometimes we can see quite well and they think they've caught us cheating! lizziebee, I use buses to get around my city (in New Zealand). It takes longer than driving so I fill the time by striking up conversations with total stranger at bus stops and listening to their stories. Now I feel sorry for drivers cocooned in the isolation of their cars. They don't know what they're missing! stenoqueen - realising that you're stuck with azoor and you've got to live with it is a big step. Well done! Life will still be hard, but you'll find yourself thinking more about what you can do, and less about what you can't do. Let's face it, what are our options - curling up in the foetal position and pulling the bedclothes over our heads, or marching on? So despite the ups and downs we march on.


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Also..I forgot to ask if most of you are considered legally or partially blind in your individual states??


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Hello. I'm a 34 female from Texas. I was just recently diagnosed with AZOOR after three, yes three, years of testing. I even went to the Mayo clinic in Minnesota and was not diagnosed correctly. I am seeing many retina specialists now. Because I was just currently diagnosed, I'm looking for any information about this disease. I had some strange symptoms, much like that of Multiple Sclerosis patients at the beginning throughout my body. One day I woke up to peripheral vision loss of my left eye and has been that way ever since. I, too, am afraid it will happen to my other eye. :( I was treated with IV steriods for three days on slow drip. I made my life a living hell. I could not function for a little over a week. I have a five year old (three year old at the time) and it was miserable. I could not sleep. I felt like I was crawling the walls, hardly could keep things down..basically laid on couch and in bed for the whole week. Because I have lived with this for a few years now, I've learned to deal with it better now. I know that it cannot be corrected..so I've had to accept what I cannot change and try to live life to the fullest. I am so glad I found this site and ya'll. I can learn from all of you and your stories and hopefully find out more about our condition. Wishing all of you the best! :)


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hi.
im in the uk , an today i have received a letter from my hospital , after many tests thy have come to conclusion i have azoor,,, having never heard of it i spent all afternoon looking it up on line.
many of the things on here i have read are what i am having trouble with ,, blurry blobs , the light etc,,
its only in one eye at the moment , and im quite scared how worse it will get and will it go to the other eye .
my partner doesnt drive , so im finding everything quite worrying at the moment and really dont know what to think.
like many of you have said the doctors have done test after test ,and trying to explain what or rather what i dont see is quite hard to explain, we could do with a "terminator" eye which records what our vision sees.,,now i know what it is and nothing can be done i have to come to terms with that part and now concentrate on what happens if !!! but so glad i found this site and have learnt alot from reading all the messages ty everyone xx


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Hi Daia,

Regarding the light issue: The best way I can describe it is as I have said earlier, "when it's dark, there's too much dark and when it's light, there's too much light". We have had some sunny spells here in the UK recently (a rarity I know), and I find that it does affect my vision in a negative way. My eyes often ache in bright sunlight and everything seems to have a slight misty effect. I was visiting with a friend over the weekend and we were sat outside drinking tea (such Brits we are) and I was trying to explain to her what things look like in bright light. Anyone who has seen films made in the 1940s or 1950s, will remember how when they do a close up on a beautiful actress, they used very soft lenses. Well the effect is similar to that when it's sunny. Everything seems to have an aura around it now (for me at anyway). I don't think there's a day goes by when I don't worry if things are getting worse. I find myself very often checking my vision and when I do notice a real difference (like the aura effect), it's scary. When you're a patient and not a clinician, you don't know what is relevant and what isn't. Everyone deals with their diagnosis in different ways but I think most people will agree that the first year is the hardest. There's a lot of adjustment and many questions go unanswered simply because the information isn't available. Trying to get people to understand what you live with every day isn't easy but it's possible to do. It would be helpful to have a computer programme available to play with so that we could produce pictures that show the doctors exactly what we see. It might not help with treatment but at least we could be sure they knew what we could and what we couldn't see. I am not aware of light actually damaging your vision but call your doctor and ask. I've never yet had any of my doctors mind if I telephone with a question. Kind regards, Michele


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Hello daia:

This is Maureen Duffy, who monitors this discussion board. I hesitate to offer advice online but generally, outdoor light or dunlight will not harm you, your retina, or worsen your vision.

However, many people with AZOOR report that they have extreme light sensitivity which causes great discomfort. I don't know where you live, but have your doctors mentioned the possibility of trying "absorptive lenses"?

Absorptive lenses are specialized wraparound sunglasses that filter out ultraviolet and infrared light. The range of possible tints includes yellows, plums, green, blues, and browns. There are several manufacturer websites that explain the range of absorptive lenses very well.

The first is NoIR Medical Technologies: (http://www.noir-medical.com). (NoIR stands for "No Infra-red" light.) You'll see that there are different colors and tints, and many of the colors also have a percentage sign. The percentage sign represents the amount/percent of visible light transmitted through the lens.

Also, Eschenback Optik (http://www.eschenbach.com/products-absorptive-filt...) provides a good overview of Solar Shields, another type of absorptive lens product.

Do you live near a low vision practice or an agency where you could determine which color, tint, and percentage of light transmission is right for you?

Maureen


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hello I am a new member of AZOOR patients from 2 weeks>Did you know if light can worst my vision ,I can work into the light or It will destroy my retina?


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Thank you Lynley,

I did post a reply previously to your beautiful poem but it doesn't appear to be here. Thank you so much for the poem, I was very touched when I read it and it was incredibly kind of you to post it for me. I'll let you know what the hospital say on 24th. Take good care of yourself, you're a very special soul. xx


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Dear Michele
If you weren't so far away I'd give you a big hug. Failing that, I'll send big fluffy clouds of caring, and a poem:

Beannacht ("Blessing")

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.

And when your eyes
freeze behind
the grey window
and the ghost of loss
gets in to you,
may a flock of colours,
indigo, red, green,
and azure blue
come to awaken in you
a meadow of delight.

When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

~ John O'Donohue ~(Echoes of Memory)
Kia kaha Michele - these are long hard days, but as each one passes it brings 24 March closer. Lynley xx


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Hi everyone,
Well i'm about 3 - 4 weeks into the "treatment". I've had a slightly upset stomach, I feel very lethargic all the time, I find i'm having quite a lot of difficulty concentrating which is causing me minor problems at work, I find I have very little interest in anything and I feel quite sad most of the time. However, I am 49 years old also going through the menopause so all these symptoms may be purely because of that (how am I to know?). I'm tired. I'm tired of hospitals and doctors and injections and medication and uncertainty. I've had enough now I think. I have an appointment at the hospital on 24th March and will continue to take the tablets (Mycophenolate Mofetil or Cellcept as it's otherwise known), until then but I think at that point i'm going to call a halt to it all. I feel that the medical profession have done all they can. They cannot tell me if I will retain my sight or not. I have seen so many different doctors and I'm so frustrated because I feel like i'm being passed around like a parcel. At the end of the day, whatever is going to happen is going to happen. I was told that Azoor is a very rare condition, yet my doctor says he has 4 patients with it, I see so many different message boards from people diagnosed with this condition, so many people struggling to make sense of everything, so I have to ask myself "just how rare is this rare condition?" I am becoming increasingly concerned that Azoor is diagnosed because they cannot diagnose anything else. When all else fails and the symptoms do not fit known eye conditions, well then it must be Azoor....?? I think it's time to simply leave it alone and wait and see what happens. Thank you to everyone who has shown such support and who live with this incredibly frustrating condition every day. Kind regards, Michele xx


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First time hearing this dx, dr in Houston for past 5 yrs said I had optic neuritis - by process of elimination. Moved to Dallas found new dr to establish my eye health, like dr and assoc and they seem confident it is azoor. Within past 5+ yrs of vision loss, no change - right eye only.


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Hi Keroazoor The problem with azoor is that it seems to affect everyone differently. If azoor occurs along with some other eye disorder like keratoconus it may not be obvious for a long time that there's something else going on. If it occurs alone the doctors usually eliminate the most likely eye disorders, and any other disorders that may affect vision, before testing for the rare ones. My understanding as a layperson is that azoor shows up in tests as an electrical malfunction of the retina. It could have many different causes and develop in many different ways, and produce many different visual symptoms - so it's hard to find common factors among patients, apart from visual disturbances that can't be easily explained. I saw a medical article recently suggesting that there may be two types of azoor. There may turn out to be more than two, but because it's so rare it'll probably be a long time before it's fully understood. In the meantime I think it's somehow reassuring - for both patients and doctors - to put a name on this mysterious electrical malfunction of the retina for which we don't understand the cause and for which there is no known effective treatment and no known cure, and for which the prognosis is uncertain. So let's call it azoor. At least we know that for most people azoor does stabilise. So once we accept that we're stuck with it, and there's a lot more to life than our eye troubles, the world somehow becomes a more cheerful place.


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I am so surprised to see so many people here.. Considering it is so rare I was surprised to see anyone! I live in Grand Rapids michigan and have been diagnosed with AZOOR for about a year.. Went to see multiple doctors but ultimately ended up at University of Michigan with my eyes prodded for the millionth time only to be told the same as what I have read here.. He said it looks like it happened a long time ago and seems stable..
My question is when you lost your sight did you notice it right away and was it followed by extreme eye pain for days at a time.. I called mine eye aches and saw an eye dr who just shrugged his shoulders. It was only years later when I saw my eye doctor about my kertaconus that I noticed my vision loss... First was diagnosed as retinitis pigmatosa then FINALLY AZOOR..
Also I believe we all carry a protein that attacks the retinal cells.. Is it linked to some other conditions I should be aware of?..
In short that was journey.. Good to 'see' you here and to know I am finally NOT alone..


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Hi Michele - It's great that you had such a good session at the hospital and had all your questions answered. It's so much easier to make decisions about treatment when you can work through the issues with a doctor who listens, and cares, and responds. Best wishes for the treatment. Lynley


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Well I went to the hospital. The vision in my right eye has deteriorated slightly (I was only there in the beginning of November), my left eye is doing well though. They have given me a course of Mycophenolate Mofetil that I have to take for at least a year. This involves weekly blood tests, then fortnightly ones, then monthly. I'm back at the hospital in 6 weeks but have made it clear that if I suffer with any side effects then I will discontinue the treatment immediately. The good thing about this medication is that I can just stop taking it and I don't have to "step down" the treatment like steroids. I do have small cataracts on both eyes which are right the middle of the lense and therefore does affect my central vision but these are not a cause for concern yet. My macula are fine and show no swelling. So, fingers crossed this works. If any clinicians read this please take note that seeing 7 different Consultants is not nice. You build a level of trust with your doctor and this cannot be achieved when you see someone different almost every time. However, credit to the doctor I saw yesterday. I had a lot of questions and he took the time to answer every single one. This medication is my last chance, there is nothing else they can do other than to offer me steroid injections which I've already refused. I do not think any potential benefits outweigh the risks and there is no evidence that they work anyway. To all of you who have been diagnosed with Azoor, there is a huge amount of support (although not much information) out there, so use the message boards and do your research. Don't be afraid to suggest something that you have read. The doctors don't know much about this condition and mine at least, have been very honest about that. Good luck guys and girls and i'll let you know if the meds have any effect. xx


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Hi Lynley, thank you once again for your message. I absolutely will read the book as it sounds just what I need. Our stories (yours and mine) are so similar and our reactions seem to be almost identical. I have also been researching what I need to do, what I need to put into place etc in preparation for when I lose my sight (assuming the doctors are correct and that's what happens). I've looked at all the aids to assist in the kitchen, I've looked at the possibility of learning braille as I cannot stand those talking books and I've been looking at how people get around both inside the home and outside. I'm determined to retain as much of my independence as I possibly can and whilst this may all be years away yet, I don't honestly know that that will be the case. I'm not focusing on getting my finances in order so that when the time comes and I'm unable to work, at least I won't have any debt hanging round my neck. I have always been a "forewarned is forearmed" kind of person, I see no reason to treat this any differently and it does give me a feeling of taking control of a situation that I have no real control over. Proactive rather than reactive I suppose. I'm going to read the book now and thank you so much, everyone who has replied to me. I do feel as though I have taken over this message board (at least this section of it) so will sign off for a while. I'm at the hospital next week so will pop back on and let you know what they say. Kind regards, Michele xx


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Michele - This may not be much consolation, but my diagnosis is in the doubtful category too. I developed peculiar eye symptoms in December 2009. Thereafter I had appointments at the Eye Dept of my local hospital/medical school every month or so. Each time the consultant would look at the latest test results, rub his chin thoughtfully, and say, "This isn't straight forward." Then he'd order some more tests. In October 2010, my consultants decided that the nearest thing that fitted my test results was azoor. None of them had actually seen a case of azoor. Then in 2011 a retinal specialist arrived who had seen cases of azoor at Moorfields Eye Hosp in the UK (I'm in New Zealand). "It's not azoor," he said. "I've never seen it before. I don't know what it is."

Well, whatever it is, it's something like azoor. Four years on my sight is reasonably stable and l've learnt to live with it, but I can sure relate to your anxiety. Here are a couple of things that helped me cope during that stressful early time:

There's a free book online by Swedish low vision rehabilitation specialist, Krister Inde called "See Bad, Feel Good". It's the most understanding and inspiring guide to coping with vision loss that I've found. The version I have opens with "When your vision fails, it is easy to lose your footing. Your sense of being whole as a person can cease to exist for a while. But it does not mean that you have lost that feeling forever." You can find the book here:
http://www.arkiv.certec.lth.se/doc/seebadfeelgood/...

During those anxious early months I was desperate for information. My main question was: "What do I need to do, while I can still see to do it, so I won't be caught unprepared if my sight deteriorates further?" I found that doing things like getting better lighting and decluttering my house (a work in progress!) were not only useful in a practical sense, they made me feel less helpless, and more in control of my life.

Krister Inde says, "If you have a problem, and you deny you have a problem, then you really do have a problem." Michele, even though things are really tough right now, just by having the strength to say - I know this isn't going away so I'll have to face up to it - shows that you have the strength to tackle this journey. There'll be ups and downs along the way, but gradually you'll find more equilibrium, and more happiness, returning to your life.

Kia kaha (that's Maori for "be strong")


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Sue, thank you for this, more importantly thank you for understanding that the waiting is the worst part. Most days I have a "glass half full" outlook, unfortunately though days like yesterday are a definite "glass half empty" outlook. The fact is that I do have my sight and whilst I have to wear glasses for close work and glasses for distance, my eyes are still in pretty good shape and my prescription is a mild one. I should be grateful for that and I usually am, very much so. I honestly don't think that if or when I lose my sight, it means my life is over. I know it isn't and I will meet any challenge presented to me, head on. It's the uncertainty that gets to me sometimes, not the diagnosis. I read these messages here and my heart aches for everyone who struggles with their diagnosis because I understand their pain and frustration, we all do. I read messages such as yours and they are so inspiring and they help keep everything in perspective. I'm not moaning about the diagnosis, truly i'm not. I just want others to know that it's ok to have your bad days and to feel angry, but equally, we need to know that we're not alone, that everyone does care (here at least) and that the support you need is out there. Whatever happens, whenever it happens, even if it doesn't happen, we have a support network to call upon when we need it and people like yourself will make our experiences that much easier to bear. Thank you so very much. xxx


Adjusting to blindness from any cause, was, Re: AZOOR



Michelle,

You're correct in your assessment that you're the one who has to deal with the changes in your vision. I wonder what it would have been like had I had access to message boards and instant support thirty years ago when I became blind. When we were in grad school, and yes, that was post blindness for me, we had a lot of philosophical discussions about blindness and disabilities in general. One topic was, if you had to have one disabilitty, what would it be? Those of us who had a visual impairment or blindness chose a visual impairment or blindness. We had already been there and done that. We knew that blindness didn't mean the end of the world. Interestingly, although students in a blind rehab degree program, none of the sighted students chose blindness. The other question is, If you had to be blind, would you choose to go blind gradually or lose it all at once. I had a hard time understanding that gradual sight loss is a more difficult adjustment. Becoming totally blind all at once, without knowing it was coming, well, as traumatic as that might sound, it's probably the easier adjustment process. But trust us, there is life after blindness. Hang in there.

Sue


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Hi Maureen and Lynley. Last night I wrote a very long response, for some reason it hasn't been posted, maybe my fault. Long story short...My retina is dying, I have various issues with my sight. My Consultants (there are many) have said that they are unable to diagnose me with any one condition because I tick many boxes of many conditions but I do not tick all the boxes of any one condition. Recently I was told I have Azoor. They feel that this is the most likely diagnosis. To me, it feels like a "best guess" scenario. Well frankly I can go to my greengrocer if I want a guess. I will try the filter lenses Maureen, I definitely will. Unfortunately I am unable to offer any support to other Azoor sufferers because I do not feel qualified to do so. At the moment I simply have this diagnosis (along with other confirmations of all the different things wrong with my eyes). Bottom line, i'm losing my peripheral vision and whilst everyone I have had contact with has been extremely supportive, no-one can deal with this but me. Best I can do is to to keep everyone updated with regard to my own journey and I hope it will at least let them know what happens in order to remove some of the uncertainty of their own journey. Kind regards. xxx


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I have had AZOOR for the past 5 years. I have had. Ospecialists refer me ut of the office because n oone knows about it or wants todeal with it. I was then diagnosed with mixed connective tissue disease. At this point i was put on imuran
I went from having only about 30 percent of vision in my right eye to nearly allof it back. Not with the visual acuity i had before but vision! In 7 days too. I continued my stable vision until a work related accident and had a slight relapse. My rheumatoligist works with my eye doc. I would love to talk to anyone with AZOOR! You are not alone °·°


Re: AZOOR



I just want to say a big thank you to all who replied to my post, I read them all and all are very informative.

Lynley Hood a big thank you for yours, as that has given me encouragement, I am terrified of losing my sight and it's got me down badly, so that was really good to read.

It's also interesting that others suffer from Uveitis as well as AZOOR. Both inflammatory conditions then.

MaureenD thank you for your post too.

Thank you all, I go next week for the electrogram test thing, so will see what happens but at least all is quiet in both eyes at moment.


Re: AZOOR



Hello Michele64:

This is Maureen Duffy, the social media specialist, blogger, and blog editor for VisionAware. I also monitor the eye condition discussion boards; thus, my entry into this Azoor discussion. For the record, this is me, my background, and my experience: (http://www.visionaware.org/section.aspx?SectionID=...). Please note that my experience is as a vision rehabilitation therapist and low vision specialist, with 30+ years in the field. I am not a medical doctor.

I always follow the Acute Zonal Occult Outer Retinopathy (Azoor) discussions with great interest. Why? Because Azoor is quite rare, yet there is a robust online community discussing it here at VisionAware. It is clear that I can learn much from all of you. I thank you for sharing your experiences ? and frustrations ? with this rare eye disorder.

I especially took note of your recent posts, in which you expressed your frustration with the diagnostic and treatment processes, which included the following statement: "I don't see the point of taking medication that has no expectation of actually working." It's a difficult call, I know, but consider this: Azoor, as a distinct disease entity, was only named and isolated in 1992-1993 by J. Donald M. Gass, MD: (http://www.ncbi.nlm.nih.gov/pubmed/8340485).

By all accounts, Dr. Gass was an exceptional diagnostician, practitioner, and teacher. This is his 2005 obituary, which explains his life's work in more detail: (http://www.mc.vanderbilt.edu:8080/reporter/index.h...)

Since Azoor is rare, and since it has been formally recognized only since 1992-1993, it's likely that many doctors have never encountered it in their practices; thus, in many (but not all) cases, Azoor becomes a diagnosis by exclusion. In other words, it's necessary to eliminate/exclude other possible causes to arrive at an Azoor diagnosis, which is reflected in many of the Azoor posts in this thread.

What is the cause of Azoor? As all posters (and you) have discovered, that has not been determined; however, many cases involve inflammation, which is being studied as a causal factor in many other diseases as well.

Some of the causes of Azoor that are being studied include:
- an infection of the retinal photoreceptors adjacent to the optic nerve, likely from a viral source
- an interplay of genetics, the immune system and environmental triggers
- a fungal infection
- a viral infection and corresponding autoimmune process.

What is the cure? No one knows yet, as you and the other posters have clearly experienced. However, since inflammation is usually evident with Azoor, I can understand why your doctors want to try a course of anti-inflammatory medication. The decision is yours to make, of course, but there is a basis for their recommendation.

Another hallmark of Azoor is extreme light sensitivity. Have your doctors mentioned the possibility of trying absorptive lenses?

Absorptive lenses are specialized wraparound sunglasses that filter out ultraviolet and infrared light. The range of possible tints includes yellows, plums, green, blues, and browns. In my work as a low vision specialist, I used to let patients try several different colors and styles before we decided on the correct choice. That's the key: actually trying on a variety of sunlens colors and tints and determining what works for you.

There are several manufacturer websites that explain the range of absorptive lenses very well.

The first is NoIR Medical Technologies: (http://www.noir-medical.com). (NoIR stands for "No Infra-red" light.) You'll see that there are different colors and tints, and many of the colors also have a percentage sign. The percentage sign represents the amount/percent of visible light transmitted through the lens.

Also, Eschenback Optik )http://www.eschenbach.com/products-absorptive-filt...) provides a good overview of Solar Shields, another type of absorptive lens product.

The bottom line is that it's probably necessary to visit an office that carries a supply of these lenses to determine which color, tint, and percentage of light transmission is right for you. A good low vision provider in your area and/or an agency for the visually impaired that has an "aids and appliances" store are usually the best places to start.

One more resource for you to review is a recent article on AZOOR that has been posted on VisionAware. The link to it is:
http://www.visionaware.org/section.aspx?FolderID=6...

Sorry for the long post! Again, I thank you and everyone else who has contributed to this Azoor thread. It is very helpful to learn more about Azoor from the patient's point of view.


Re: AZOOR



Hi Michele & Linda - It's just occurred to me that behind the worrying question: what happens now? - is an even more worrying question: am I going to go blind? While nobody can predict the future, the results from the two follow-up studies into azoor in the medical literature are reassuring.

One study reviewed 51 cases (Gass et al 2002), the other reviewed 131 cases (Monson & Smith 2010). Both studies followed patients with azoor for at least three years. These results don't tell us what to expect in individual cases, especially when azoor occurs along with other medical conditions, but they do give us an indication of what is, and what is not, worth worrying about.

Both studies found that azoor usually occurs first in one eye, but can sometimes develop in the other eye months, or even years, later. Almost all cases stabilize within six months. After that the vision of people with azoor either improves or remains stable, only a very small minority show some deterioration. A few patients have recurrences of azoor, but in all reported cases nobody went blind from azoor.

So, Michele, this news may not be cause for celebration, but next time you have a glass of wine with your friend you'll have a bit more useful information to discuss.


Looking for Uvetis?



Hi, I heard that someone on this list wanted to talk to people that have uvetis? I have it as well, in both eyes. I was diagnosed in 1996 and was a low vision person for about 4 years until I lost it all. I have the form of uvetis that is called VKH syndrome and it was very aggressive.

At the beginning I had major migraine headaches and severe eye pain from the internal swelling. I took steroids for a long time to reduce the inflammation as well as other drugs that eventually did not work. It has been about 16 years since then and I have adjusted well to total blindness. I have been employed for several years and still am. I travel, own my own home, participate in a sighted book club, and enjoy time going out with friends. I just recently went to a hand-building clay class and absolutely enjoyed it! My instructor said that my clay mug looked just as great as my sighted classmates. Stay tune because I will be blogging about it right here on the VisionAware site. I feel that my vision loss has not stopped me from living a full and happy life.

If you want to talk more let me know. But I would advise maybe starting another thread. I missed this conversation because of the original topic and since I was unfamiliar with it did not really pay close attention.



Re: AZOOR



As a peer advisor, I'm feeling a little uncomfortable with offering medical advice on the topic of vision loss of any kind. We're peers, that's all. we're not doctors. We don't know what doctors think or what their motivations are. There may be other considerations about discontinuing or taking medicines that we don't know about.

That's all I'll say.


Someone Else with Uveitis



Hi Linda, I also have uveitis. I was diagnosed when I was very young and have been dealing with it for 25 years now. I have no useful sight at this point in my life. I'd be happy to correspond with you if you have specific questions or concerns.


Re: AZOOR



Hi folks, I have read this thread with a lot of interest, and sadness. I have suffered from Uveitis for last 20 years, last year, they diagnosed it in my right eye for the first time, and a few months later said no you have azoor in this eye. I was devasted as both are blinding conditions. Up until then I only had sight issues in my left eye. I am waiting on the electroretinagram test so they have a better idea of the stage I am at. At the moment I am lucky in that it has knocked out some photoreceptors and am only blind in the dark! But I have the flashing light thing going on all the time.

My post was also to see if anyone else also suffered from Uveitis, and I noticed someone saying they had sinus issues, I often have that, which seemed to flare up the Uveitis.

Many thanks for your time in reading this folks.


Re: AZOOR



Hi Lynley, again I agree with everything you say. Before my diagnosis, when my optician first referred me to the hospital, I was told that I had cataracts starting to develop, but like you, my Consultants haven't mentioned it and when I asked, they said it was nothing to worry about??? Well, er, I disagree actually, even though i'm not a doctor. They've said I have about 3 things wrong with my eyes and have admitted to being unable to diagnose me with any single condition but they think azoor fits the bill better than anything else. Not much help to me really. As I said previously, it's not knowing how the disease will develop and over what time frame we're looking at (pardon the pun) that I find the most frustrating. I'm back at the hospital in February so I'll see what the hospital say then but i'm getting a bit fed up with these visits back and forth just to have no real answers other than a condition that has no cure and they know almost nothing about. I'll let you know what they say when I've seen them and thank you so much for your messages. They really have helped more than you know. My family know nothing of this. I've discussed it with a good friend but as she isn't going through the same thing, how can I expect her to understand? The simple answer is that I don't. I just offload my frustrations, she listens and then we pour a glass of wine. ha ha. Thanks again. Kind regards, Lioness xx


Re: AZOOR



Hi Michele - you're right, there's a lot to get your head around with azoor. Accepting that you're stuck with it is a really difficult step to take, so be proud of yourself. Now you can get on with learning how to cope knowing you're the same strong, smart person you always were. Things are really tough right now, but as time goes on there'll be more patches of blue sky among the clouds.
I had the same experience as you - when I developed azoor my visual acuity deteriorated at a frightening rate. This turned out to be because I was developing cataracts. Apparently when you get an eye disorder, cataracts often follow. The optometrist told me this when I went to get new glasses. The consultants never mentioned it. I guess they were more interested in my retina. I've since had the cataracts removed. This has made reading easier, but the azoor problems continue - too much light, not enough light etc - but they don't bother me as much.
Take good care of yourself at this stressful time. I think the best thing anyone can do is eat a health balanced diet with lots of fresh fruit and vegetables, plus regular exercise and lots of rest. These things aren't just good for your health, they're good for your morale - doing something positive to help yourself when medicine has no answers helps you feel more in control.
Best wishes, Lynley


Re: AZOOR



Hi Lynley, thank you so much for your post. You're absolutely correct in everything you say, especially when you mention the difficulties in accepting this condition. I have been through the whole "this is going to clear up soon" stage and I have accepted that this isn't going to get better. The bit I struggle with is the fact that there are no hard and fast rules with regard to the degeneration of my sight, or the length of time it takes to reach its final stage. The Consultants have told me that a small area of my retina is dead near the optic nerve and that it is a condition that will worsen in time and there is no cure (this before the diagnosis of azoor). I can deal with that. But it's so hard when you don't have any hard and fast rules. If I know exactly what is happening and when then I can prepare but this is like being constantly in limbo and so incredibly frustrating. I work with computers all day and at the moment glasses help but I've had a pretty big dip (for me anyway) in my vision within the last 6 months. I've gone from not really needing glasses for work, to over the counter +1.00 to +1.25 which I realise are mild but that's in 6 months. I don't want the treatment because it isn't actually a treatment at all. Where my sight is concerned it's like during the day there is too much light and in the dark there's too much dark. It's the only way I can describe it and the flashing lights don't help either. I've decided not to take the medication because I really see no benefit in it and would rather just let this happen and deal with it as it progresses. Thank you so much for being a voice of reason for me. Kind regards, Michele


Re: AZOOR



Hi Michele - I've had azoor for 4 years now. I think for most of us with azoor the first year is the worst. Developing a visual impairment is bad enough, discovering that doctors - the very people we rely on to cure our ills - have no effective treatment or cure or prognosis can be devastating.
When we finally stop hoping that we'll wake up one day and find it was all a bad dream, and we come to realise that we might be stuck with azoor, we go looking for information and advice. Sounds like you're at that stage now Michele.
The important thing to remember is that you're still the strong, interesting person you always were. Your life has changed. But there's much more to life than azoor (that's why I'm writing azoor, rather than AZOOR).
In making your decision about medical treatment, it helps to look at azoor from a doctors' point of view. Doctors want to save lives, cure diseases, make people better. Azoor makes them feel like failures. Throwing things at azoor in the hope that something might work makes them feel better. But that's no reason for accepting treatment you don't want.
Michele, if you "don't see the point of taking medication that has no expectation of actually working" you have the absolute right to decline the treatment. To make it easier, plan what you're going to say in advance. I suggest you tell the doctors how much you appreciate everything they've done for you. Tell them you've given a lot of thought to everything they've told you about the treatment and its side effects. Tell them you've also considered the ongoing stress of waking up every morning for a whole year with the thought "Is the treatment working? Are my eyes better or worse or the same as they were yesterday? " and the ongoing costs in time and money of travel to appointments and sitting in waiting rooms. All of which, as they say, is unlikely to do you any good. Tell them you would appreciate regular follow-ups, but you've decided against any more treatment at this stage (if that is what you decide - as I said, it's your decision). Hope this helps. Good luck whatever you decide. Lynley


Re: AZOOR



I live in the UK and my eye specialists have gone back and forth with their diagnosis of AZOOR. They finally seem to agree that this is what I have. More so in my right eye than my left. I have taken oral steroids to no effect. 75mg per day for the first week, down to 50mg the second week and so on till I came off them. I had steroid injections in my eyes which helped calm the flashing lights and did seem to help my vision a little, they did stop the macula leaking (although I'm still not clear on exactly what was going on there). I was told they could do this treatment repeatedly but on the second attempt, it became apparent that this was not the case and this treatment has now been discounted. They now want to put me onto anti-inflammatory medication for a year. To say i'm reluctant would be an understatement. I don't see the point in taking medication that has no expectation of actually working. Reading the other posts here, it seems that others feel the same way. My Consultants have made it clear that it's a long-shot but they're keen for me to do it. I don't want to but I feel like I should at least try, after all if they're willing to give it a go, then maybe I should too. I don't know what to do as it all just seems such a waste of time. My vision in my right eye is getting pretty bad now and I have only a small area left. My left eye is going down the same route but I have more vision in my left. Glasses don't help much. It's such a relief to know i'm not the only one going through this.


Re: AZOOR



I am glad to find this group too! All of the other sites have posts that are WAY outdated and aparently ignored. I am 44 years old and one year and 3 days ago, I lost a very large portion of central vision in both eyes. It happened in one eye and then the other several hours later. At first, I was totally unable to see any faces or complete any tasks without the help of my husband and children. Within the first 3 months, I recovered some vision in my right eye which allowed me to go back to work with the help of a software program called ZoomText. It's a long story but basically it took 5 months and several expensive tests before I was finally given a diagnosis of AZOOR. I said 'awesome, what do we do now'? I was floored to find that this is so rare that there is no proven treatment. I've tried Valtrex and it didn't do anything but make me dizzy and just had a steroid injection in my left eye. I opted not to try long term steroids because of the horrible side effects. I sincerly hope that researchers like your doctor at Northwestern can figure this out.


Re: AZOOR



Great to find this group. Hopefully we can share our experiences and be our own advocates in finding some common thread. At the very least, sharing our experiences can only help.

I am a 40 year old man who has AZOOR. My eyes (for better or for worse) have been stable for 22 years. I had vision loss in my left eye when I was 16 - lost use of 99% of my cones in my periphery vision, but did not lose central vision. I then got another "attack" when I was 18 in my right - lost 99% usage of cones in my right eye, INCLUDING my central vision. For those who have been recently diagnosed, I think my case of having AZOOR affects both eyes is exceedingly rare. AND I can also say that I have lived a pretty normal (but obviously very affected) life with my condition.

I don't go anywhere outside in the daytime without extremely dark glasses - even on overcast days, i wear suglasses. Without them, my vision would be like looking through a pinhole. I highly recommend using sunglasses outside all the time for anyone affected with AZOOR. I used to get a special kind of lens (the amber-tinted eagle lens) but they no longer make that lens, so I am hoping to find a new one and would take any recommendations.

And lastly, if you are seeing Dr. Janpol at Northwestern, Acey, you are in very good hands. He is basically THE MAN when it comes to studying AZOOR, though there may be a few others and hopefully more to come. There was a Dr. Gass - first in Miami and then in Nashville, who was a fantastic doctor and I think anyone who studied under him has carried on his interest in AZOOR.


Re: AZOOR



NeedHelp2 - I am currently in the first stages of testing at Northwestern in Chgo and they have ruled out everything except AZOOR and Retinitis Pigmentosa. I'm hoping to get more answers on Thursday of this week. I've been trying to look up a few symptoms but to me at this point they all seem the same. Originally at another Ophthalmologist I was diagnosed with Ocular Histoplasmosis. The Dr's at Northwestern are telling me now that I have been misdiagnosed. My question is how do you feel about these Dr's at Northwestern now? I see your original post is from March of this year.


Re: AZOOR



I was diagnosed with AZOOR in my left eye a little over a year ago. I'm lucky enough to live in Utah close to one of the leading Eye Centers in the country and was diagnosed fairly quickly (3 months and 5 or 6 visits).

The doctors tried Valtrex with no improvement and chose to not continue that treatment. There is not real known treatment. I would tell anyone who is on any "treatment" for AZOOR that it's not worth the side effects.

The worst part of AZOOR for me is the light sensitivity (car headlights at night can be almost debilitating and when the sun shines on the snow). My Dr prescribed FL-41 tinted glasses (the kind they prescribe to migraine sufferers) for me to try for driving during the night. I haven't ordered them yet. I was hoping someone else has tried them and could tell me if they work.

I also get frequent sinus infections and when there is pressure in my sinus cavities it seems to do funny things to the blind spot I have. I'd be curious to know if my sinus problems are related somehow, although the Dr's don't seem to think so. Has anyone else suffered from any medical problems they think may be associated with their AZOOR.

I am now on a regular 6 month visit schedule with my Dr at the University to track my progress. There has been no improvement nor any more vision loss since day one. Gotta look at the bright side...hahaha...no pun intended.


Re: AZOOR



hi. I too have been recently diagnosed with Azoor. I am really frustrated that such a disease should suddenly appear and without any cure or cause that is known. Look I have just heard about a boy who has found a cure to a stomach cancer and was welcomed by Obama. He did it by contacting all patients and finding out a cause that had been missed by doctors. I am going to reach out to every Azoors suffer and see if we can find a common thing that started it for us and from this find a cure. Are you in? Google are helping me with a open source mapping tool. If I get interest I will share a contact for us all to share?


Re: AZOOR



hi my name is jessica and im from ga and was diagnosed with AZOOR it took the doctors 4yrs to finally diagnosed. and i would like to talk to someone who knows more info and knows what im going through, i just get so frustrated because i dont know why this is happening to me, what caused it. the doctors say i just have to learn how to accept it but its easier said than done.


Re: AZOOR



I was diagnosed with Azoor in 2001. I went for a few years with no changes. Then I began to lose peripheral vsion in my left I. My doctor put a steroid implant in my eye and it stabalized my vision. The implant last for 2 to 2.5 years and it is time to change it out. Has anyone else been treated with the steroid implants for this?


Re: AZOOR



I was diagnosed with AZOOR at Northwestern in Chgo and no change to symptoms since 7/2011. Prednizone was a horrible drug for me and no change to symptoms. Has anyone tried Cellcept?


Re: AZOOR



Hello Laurie - It's certainly worrying when your vision starts to deteriorate and you don't know why. It's hard to explain to the professionals too, isn't it - especially when, as is the case with ANZOOR, your visual acuity is okay and there's nothing much to see when the experts look into your eyes. It's only on the electrical tests of the retina that the problems show up. I haven't had any treatment for my AZOOR either, but that's because there's no known effective treatment for AZOOR. Anti-virals and steroids have been tried, but there's no evidence that they work. So I'm happy not to be taking medication that won't make any difference and might have unpleasant side effects. The other problem with AZOOR is that it's so rare the prognosis is uncertain. We just don't know what the future holds. However it would be worth getting your eyes checked by an eye specialist. Cataracts are a common cause of deteriorating vision and are easy to treat, and if you are developing macular degeneration, the sooner it's picked up and monitored the better the outcome. Hope this helps. Lynley


Re: AZOOR



I have had AZOOR for over 7 years now. It has not changed since the beginning. There is a group on facebook under just AZOOR. I have not had any treatments. My vision loss has not been that bad. In the beginning it was a sudden blind spot in both eyes. Now i am having a slow deterioration of vision but not sure if it is cateracts, AZOOR, or macular degeneration. I wish someone in the vision field could see what i see.


Re: AZOOR



Hi. I have had azoor for nearly five years. My doctor, Dr. Freund of the VRM in NYC is one of the prominent researchers and doctors for this, and other white dot syndromes. He has written many articles on my case and treatment. My current treatment is a high dose of immune suppressants, specifically Cellcept. A rheumatologist manages my medicine while Dr. Freund monitors the illness.
I haven't been as lucky to have little influence on my life, it has been detrimental to my quality of living, mostly do to the medicines side effects. The upside is that the medicine with the side effects has somewhat slowed the disease progression. I have significant loss none the less. With a rare disease such as this I would suggest seeking other opinions about treatment with the knowledge that this is new disease with no proven treatments and long term studies.
I am always available to talk about this incredibly rare disorder as one of the few people who have had it for a long time and tried experimental treatments.


Re: AZOOR



Hello. FINALLY, others who understand what I'm going through. I was diagnosed with AZOOR a year ago. My blind spot is in my right eye spanning the left part of my vision. The condition is more noticeable in natural light. I get purple and yellow visuals in my eye and also see a neon yellow blob when I walk into a dim room, but only for a few seconds. I'm very willing to experiment with some of the drugs I've read about such as Valtrex and Prednizone, but no doctor I've seen is on board for trying anything that isn't proven. Ugh...anyone have more information for me?


Re: AZOOR



Hi I m not sure if you are still after some posted as it seems a few months ago that u posted this but I ll put myself out there anyway. Hello I was 15 when I got azoor. That was eight years ago!! It does not affect me daily but does have its affects, I would love to get some opinions from some else who is going through the same thing. It's hard for other people to really understand, we r rare people after all!! Looking forward to your reply


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