Hello,
I have had many intermittent eye issues since 2013 including diplopia and nystagmus (both thought to be due to nerve palsies), flashing lights (first diagnosed as MEWDS and then AZOOR), uveitis, optic disc edema, and “drusens” (in quotes because might not be this!).
I was diagnosed with “atypical MS” in 2020 due to spinal cord lesions and was in treatment until last year and didn’t have any eye or spine issues while on it. I recently got a new neurologist who is a neuroimmunologist/MS specialist who said he doesn’t think I have MS but based on a certain biomarker in my csf, neuro TB, CNS lymphoma, or neurosarcoidosis. TB has been ruled out but the other two are pending.
The eye part is that I was sent back to the eye specialist and I have posterior uveitis and he is questioning whether the “drusen” are actually that. His note says: “ bilateral peripheral punctate lesions in both eyes, slightly worse from 2021 but much more prominent than 2019. These could potentially be peripheral drusen and unrelated, but given her age and increased number of lesions, these could represent small choroidal granulomas.” I have attached links to some of the fluorescein angiogram pictures.
Just wondered if anyone has any experience with these worsening lesions that appear as if they are drusen but actually are related to something more systemic such as cns lymphoma or neurosarcoidosis? (I understand these are not especially common so not sure if anyone has seen them before? I wanted to get other opinions because there’s not anything being done about them or the neuro issues because they’re kind of stuck figuring out what it is.) I also wonder if they have only progressed slightly from 2021 because I was on immunosuppression but wasn’t from 2019-mid 2020? Thanks!
https://imgur.com/a/6lSgvCy
https://imgur.com/a/5x1pNtA