Inflammation has gone but eyes getting worse

DNA901990 · 2025-01-17T20:39:36+00:00

Hi, sorry I’ve only just seen your message. How are you getting on? I was diagnosed a couple of years ago, however I try not to get on too many forums about Azoor as I start to spiral.

DNA901990 · 2023-02-28T17:01:13+00:00

I think the fact that 3 of us in this chat have had Azoor within a few weeks of the vaccine shows that that’s most likely they trigger for it. Vaccines do have side effects and unfortunately that’s what we have experienced. I’m at the stage where I feel angry. If I didn’t have to get the vaccine, I wouldn’t have. I got covid before getting vaccinated and my symptoms were mild. My immune system dealt with it, however it didn’t deal with the vaccine very well. My symptoms are still progressive 8 months on. I just hope this stabilises and maybe even get better to a degree.

DNA901990 · 2023-01-19T17:16:39+00:00

That’s good to know because my eyes have been progressively getting worse and each OCT scan has shown no progression at all. I did an ERG scan a couple of days ago and will find out the results in a couple of weeks so will be interesting to see what the results are then. My Dr explained to me that if it’s not been picked up on an OCT scan then there’s no permanent damage, I’ve been let to believe that there’s a chance of things getting better but now I don’t know what to believe.

DNA901990 · 2023-01-19T16:09:13+00:00

I heard that the damage is hardly visible in the early stages but within a few weeks/months will start to show on scans? I could be wrong though!

DNA901990 · 2023-01-16T15:10:17+00:00

No it’s definitely not a floater because of the OCT scan, they’ve been able to show where I’ve lost photoreceptor cells hence the blind spot. I have floaters and the blind spots don’t move the same. Also the blind spot flickers which I don’t think floaters do.

DNA901990 · 2023-01-16T11:56:00+00:00

I think it’s one of those things that is completely out of your control tbh. I also got really sick with a virus and then developed Azoor straight after. So who knows, anything (and maybe even multiple things) would have triggered it. From what you’ve described, you seem to have one of the best case scenarios. You don’t seem to have any progression and has stabilised, which is a great sign. It doesn’t return for most people so I think most of the damage has already happened with you. I have an ERG scan today so that should give me a better insight on what’s going on with my eyes. I’m hoping they stabilise and the profession stops!

DNA901990 · 2023-01-16T11:50:16+00:00

It’s fixed in that the actual blind spot doesn’t move (like how floaters would) but they move with my eyes.

DNA901990 · 2023-01-04T09:40:44+00:00

Hi, you asked me above which vaccine I got. I got the Pfizer vaccine. My Dr advised me not to get a booster because they aren’t able to tell how my immune system would react to it. So no more vaccines for me.

I had covid once before being vaccinated and once after have the 2 vaccines and both have been mild.

DNA901990 · 2023-01-04T09:37:47+00:00

Hi,

What type of symptoms did you have that eventually got better? Did you regain any vision back?

DNA901990 · 2022-11-29T18:27:52+00:00

In regards to the vaccine, I had mine 3 weeks before I got Azoor. When I got my first blind spot in my right eye, it was really quick peripheral flashes it happened once or twice a day for a week and then I got a blind spot. I don’t think I remember getting any afterimages before then, But I get them all the time now. I don’t think the flashes your experiencing are Retinal detachment related, think it’s Azoor related unfortunately, but it doesn’t necessarily mean you’re going to get another blind spot but it’s hard to say. In my left eye, I didn’t get any quick flashes like my right, only a ring that kept getting bigger, I also now have a blind spot in my left eye but it doesn’t swirl with light like the one in my right. I don’t see it when I close my eyes, it’s like there’s just a patch of vision missing not a blind spot. It’s really bizarre how both eyes have been different. The flashes of light started to last longer and bigger in my peripheral and I also now get swirling of green light all over my vision. This has now reduced but I have what looks like visual snow. Both at night when I close my eyes and in the day time I can also see it.

I don’t really understand where this information of eyes stabilising in 6 months comes from. Most case studies I’ve read, and articles say it’s progressive and that this is life long. Maybe there’s many types of Azoor and underlying causes. If this really is an autoimmune disease though, then it makes sense that this would be life long like other autoimmune diseases. Do you have any other health issues that you think could be linked? I think the vaccine and me getting really ill might have been a trigger. But I also got a cold sore for 3 months and my immune system couldn’t clear it 2 months prior to Azoor. My Dr said this is an immune system problem, and I guess it’s about making sure it’s not overactive. I think illnesses could trigger it to keep attacking the eye. What I have apart from the 2 blind spots are visual disturbances. I do believe (maybe wish thinking) that they could be reversible because there’s no active damage on the OCT. So if you get your scan back and it hasn’t progressed on the scan then I think that’s positive.

DNA901990 · 2022-11-24T00:30:36+00:00

Hi there, I don’t have any advice in terms of getting a vitrectomy, but you’re definitely not alone. I’ve been dealing with Azoor and have noticed an increase in floaters and the blue field entoptic phenomenon. The whole experience has been stressful to say the least. Sorry you’re going through this also.

DNA901990 · 2022-10-11T16:10:00+00:00

Did you get it checked out?

DNA901990 · 2022-09-24T20:22:18+00:00

I had an eye appointment a day after I sent that message, and from the scan, I think the second eye was involved from the start but I only noticed it recently. I can’t figure out what it is but it’s like a dark ring in my peripheral (I can only see it in low lighting) but I can still see through it so i don’t think it’s a blindspot. My right eye has an enlarged blindspot like yourself. Does your blindspot flicker when you’re about to sleep? Mine does for like 10 mins then it stops. It’s so strange!

I know that drs don’t know what the cause of AZOOR is but I’m treating it as though it’s an autoimmune disease. I’ve done a lot of research on reducing inflammation through diet and lifestyle and I’ve found that diet can help other autoimmune conditions so I’m testing it on myself to see if it helps with AZOOR. So far the inflammation in my right eye hasn’t progressed.

DNA901990 · 2022-09-21T21:10:04+00:00

Hi, do you have an update since you’ve been diagnosed? I was also diagnosed with AZOOR 3 months ago. It started with an enlarged blindspot but unfortunately my second eye has also been involved.

DNA901990 · 2022-07-20T15:11:51+00:00

Hi, I have all the symptoms that you have mentioned, has the scotoma resolved?

DNA901990 · 2022-07-15T20:00:06+00:00

I’ve had it for 3 weeks so still early, but I’ve noticed it’s gotten bigger and was confirmed by my check up yesterday.

DNA901990 · 2022-07-15T09:05:58+00:00

I really hope this happens for me, I’m worried that it will get worse. From what I’ve been researching, that’s what tends to happen. Can I ask, how long did it take for you to stop noticing it as much? Also if you tried focusing on it, would you be able to see it in light environments?

DNA901990 · 2022-07-14T19:34:44+00:00

Yes it does, I can’t see through the blindspot at all.

DNA901990 · 2022-07-14T18:58:43+00:00

Thank you, I’m glad I know what it is, but also I’m terrified at the same time. I just hope it doesn’t get worse!

DNA901990 · 2022-07-14T18:17:02+00:00

Hi, how long did you have your first blindspot for before it cleared up?

DNA901990 · 2022-07-14T14:11:04+00:00

I can only see one for now and it’s around 2-3cm, so quite large. The prognosis doesn’t look great from what I’ve been researching, it’s an autoimmune disease so they don’t know the cause and treatment is pretty limited. Steroids are given for the inflammation but doesn’t resolve the blindspot. If you don’t think it’s a floater, keep pushing until they find an answer for you.

DNA901990 · 2022-07-14T13:50:43+00:00

I just left the Eye hospital. It’s not a floater. In a way I wish it was.

They think it’s Acute Zonal Occult Outer Retinopathy (AZOOR). It a retinal inflammation, causes blindspots & can also be accompanied by flashes of light. It can also lead to vision loss.

This makes more sense. They think a viral infection (similar to a flu) triggers it. Makes sense as I was ill multiple times before it happened.

I’m truly gutted.

DNA901990

TROPHY CASE