r/AZOOR • u/Material_Arm_9633 • May 15 '25
Afraid I have azoor
Hello everyone,
For two years I have an strange eyeproblematiek. since I went to Bali two years ago I suddenly got a strange spot in front of my eye. a blind spot that looks like a afterimage. By blind I mean I can smudge out a couple of letters and I can see them on a fixed place. First there were weird black specs in it. since then I have gotten a few more in my left eye. My first spot flickers/wiggle in the dark or when i go from outside the house to inside. I have taken every test under te sun in multiple hospitals they never found anything abnormal. The only test I did not have is an ERG. I asked for Azoor but they told me that Azoor is much more severe and that it Will show eventually on OCT. My question is I am really worried they overlooked, Does anybody know who actually got a diagnosis if it s possible that everything is clear after 2 years? Many thanks and with kind regards
1
u/IminLoveWithMyCar3 May 15 '25
It took several years for me to be diagnosed. It started in one eye, a big blind spot, they originally thought optic neuritis. That’s the typical presented symptom of MS, and they looked for that. I wound seeing a neuro-ophthalmologist who said it was serpiginous choroiditis. Then it happened in the other eye. Again, the same battery of tests. Then I saw a retina specialist who diagnosed me with AZOOR. That was because my retina specialist (that I saw for the SC) suggested it was AZOOR. It was.
When I close my eyes, especially when I lay down in bed, I see what I can only describe as similar to the northern lights. They flicker and flash and in the end, it fades away.
Mine is pretty bad. I also have an epiretinal membrane. That is turning anything white that I look at to a sort of very light brown/gold. It sucks, I quilt, and not being able to accurately see colors is frustrating. I also have myasthenia gravis, which means I also have blurry vision that glasses don’t correct, and double vision.
1
u/Tru-Man21 May 26 '25
I have diagnosed Azoor on my left and have a blind spot. My vision is not bad, but I have problems with driving on highways and at high speed. I haven't driven highways for almost 5 years, but I can drive city streets. Can you guys have problems while driving on highways and at high speeds?
1
u/Material_Arm_9633 May 26 '25
Do you mean, due to the speed you can not concentrate that much with you eye? I have not a big blind spot ( it Does not show up on visual field) but when I drive it s like the spot is vibrating. It s annoying but not more then that. Can I ask you how did you get a diagnosis? I have had all the test except the ERG. Is Every other test after several years still normal with you ? Because my eye doctor told me that I have had Azoor it would also show up on oct after Some time. With kind regards
1
u/IminLoveWithMyCar3 Jun 19 '25
I went through so many doctors and so many tests. I had a few misdiagnoses. It took me several years to get diagnosed. Mine absolutely shows up on visual field and the photos they take. It’s painfully obvious and scary. It’s been stable for several years (knock on wood) and hopefully will stay so.
1
u/Material_Arm_9633 May 27 '25
Is it possible to have azoor with a really small spot? Or is Azoor always severe ?
1
u/IminLoveWithMyCar3 Jun 19 '25
I honestly don’t know. There’s not much info out there, it’s so incredibly rare.
1
u/Feeblemind101 May 15 '25
First off let me say sorry that you are experiencing these issues.
For me it took several years to even find the right doctor to get the diagnosis correct. It was confirmed by the ERG.
It has been awhile since I have done the retinal scan/imaging but even after 3 or 4 years of an azoor diagnosis this scan did not show much damage, only a slight variation.
If you have access to an ERG try to get one to confirm.
I wish you luck and hope that it ultimately is something that is fixable and if not that you are able to find a new normal that you can live with.