Neuroretinitis is a real eye sore
September 13, 2021 8:49 AM   Subscribe

For the last 5 years I’ve suffered from recurrent idiopathic neuroretinitis. About once per year I lose central vision in one of my eyes for 1-3 months. The first couple of bouts were short-term, the most recent ones have lasted longer. Has anyone else experienced this condition?

My ophthalmologist has said it is a very rare condition; neuroretinitis is typically caused by bacterial infections from a cat scratch, and I don’t have cats. It can also be confused for optic neuritis, a symptom of multiple sclerosis.

I’ve had CT scans, MRIs, and a “million-dollar” blood workup to rule out MS and several other possibilities. My ophthalmologist has no insight as to what may be triggering it, how long I will have this condition, or what the long-term impact on my vision will be.

I'd love to hear from others who have this condition.
posted by krunk to Health & Fitness (3 answers total)
 
Have you been to an eye center? It seems like your condition may be rare enough that you would benefit from a specialty practice.

This askme question lists a bunch of different centers, although I think they are all US-based. If you need suggestions in other locations, askme may be able to help.

Many of the centers listed have information on various eye issues on their websites, even if you can't get to one. Kellogg, for example, links out to this website regarding neuroretinitis. It's fairly technical reading but does seems to have answers to some of your questions.
posted by nat at 11:43 AM on September 13 [1 favorite]


Response by poster: I've been going to an eye center in Toronto who have been really good. I see both a neuro-ophthalmologist and a retina specialist, but after exhausting all the testing options they've concluded that it's idiopathic so there's no way to know exactly how it'll play out.
posted by krunk at 12:26 PM on September 13


The only other suggestion I would have is to look at rare disease support groups; there might be a specific society for your issue or a slightly more general one that covers more retinal issues. I would start looking here: https://www.raredisorders.ca/resources/
And it might also be worth asking your doctors if they know of a support group that would be relevant.
It might be that the issue is rare enough that nobody else on Mefi can give personal experience— but you’re definitely not the first or only person and there may be resources elsewhere.
posted by nat at 8:49 AM on September 15


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