Blind and Visually Impaired Community
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Anyone loose their vision to retinal vasculitis and/or an autoimmune disease? (self.Blind)
submitted by fairlyfairies
I went to the retinal specialist a few days ago and he found a little retinal artery inflammation in my right eye and a cotton wool spot in my left eye. His diagnosis was retinal vasculitis but we don't know if there is a systemic cause. Based on my research there usually is. I'm now being tested for a whole bunch of things, mostly systemic autoimmune diseases, and I am awaiting the results. I'm guessing I still have corrected 20/20 vision, but I see flashes in my right eye, floaters that are quite distracting, and I am paranoid that things are going blurry. Does anybody here have retinal vasculitis and an underlying systemic disease that caused it? What was your vision loss experience? I'm kinda scared I don't know what's going to happen.
SunnyLego 4 points 4y ago
My vision loss is due to the autoimmune disease Uveitis.
Knight_Knave 4 points 4y ago
Oh wow. I have Uveitis in both eyes for about 7/8 years now.
eyesign07 4 points 4y ago
Same here. I’m only blind in one eye, but currently fighting to save my vision in the other. Uveitis doesn’t play around.
SunnyLego 3 points 4y ago
Yep, it hit my left eye first, then 6 years later, started attacking the right. Bitch of a disease.
eversincenewyork 4 points 4y ago
Mine is also due to uveitis
fairlyfairies [OP] 2 points 4y ago
I've heard of that but I don't know much about it. Was your vision loss preventable?
SunnyLego 6 points 4y ago
If I'd seen a specialist earlier, it would have been, but I was stupid and ignored my eyesight changing, until my retinas detached. This was 2011, it came straight back and repeatedly attacked left eye, then in 2016 it started attacking right eye too. I get constant steroid capsule implants in both eyes. My side vision is perfect, but central vision damaged.
eyesign07 3 points 4y ago
Which steroid implant do you get? I’m scheduled for my first shot of Ozurdex tomorrow (a steroid implant shot). Has yours helped you?
SunnyLego 3 points 4y ago
Ozurdex. It works for between 3-6 months for me, but as soon as it has disappeared, Uveitis comes back immediately and need them again.
Still works longer than when I was just getting the single dose injection of steroids.
I tried to go on immunesuppressing drugs, as well as the implants, but they made me too sick. They work for some people, but my body couldn't handle it, and as an epileptic, I also started having tons of seizures again.
Still works longer than when I was just getting the single dose injection of steroids.
I tried to go on immunesuppressing drugs, as well as the implants, but they made me too sick. They work for some people, but my body couldn't handle it, and as an epileptic, I also started having tons of seizures again.
cae_jones 1 points 4y ago
Me too. I think. It was kinda ambiguous at first, so might be Uveitis on top of something else.
ottermobile 3 points 4y ago
Hi there! It’s nice to know there are other folks going through similar issues. I’ve got idiopathic retinopathy.... which is to say my retinas are hemorrhaging and they can’t figure out why. I’ve been tested for all kinds of autoimmune diseases and have been getting ophthalmologist treatments for about 9 months. I’ve had laser, steroid injections, Avastin injections, eylea (sp?) injections and also diamox pills. So far eylea has worked the best. With that, my vision is fairly normal. I’m going to see a rheumatologist (3 month wait) to see if a new perspective can diagnose the cause. Anyway... you’re not alone!
Otherwise_Computer79 1 points 1y ago
Did you see static and random black spots fly by like nats
fairlyfairies [OP] 1 points 1y ago
No
Otherwise_Computer79 1 points 1y ago
May i ask what urbfirst symptoms were and did glasses improve it in the beginning
annibear 1 points 4y ago
My vision loss is due to non-paraneoplastic autoimmune retinopathy (say that five times fast!). Took years to diagnose right, by the time I had an actual diagnosis, most of my vision was gone--failed steroids after a few months, haven't been treated since due to other issues. The worst part was ruling out paraneoplastic diseases. I'm in a weird spot where I've since developed other autoimmune issues, but no one's really been able to tell me if it's all connected. I've found this to be fairly typical for people with complex immune disorders. At this point I have very little vision but I really have learned to adjust, and I am truly and honestly a happy person. I've adjusted to blindness and can now do just about everything independently.
Otherwise_Computer79 1 points 1y ago
and did you see static
fairlyfairies [OP] 1 points 4y ago
Can I ask what your initial symptoms were?
annibear 1 points 4y ago
Sure--I basically lost a bunch of central vision very suddenly (well, not overnight, more a period of a few months). After a while my peripheral also started being effected. I was a teenage girl from a small town with one pediatric ophthalmologist, and he thought I was trying to get out of school, so there was a pretty significant delay.
Otherwise_Computer79 1 points 1y ago
Annie bear i was asking you these questions
Otherwise_Computer79 1 points 1y ago
how did it start and did glasses helpnin the beginning and did u see static and floaters
Otherwise_Computer79 1 points 1y ago
Was thur a point when it first started that glasses could correct it...what was it first like when you noticed the symptoms...was all ur vision blurry or just the central
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