Worsening lesions in periphery in 37F

[Sbocaja]

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

[John C Hagan III, MD, FACS, FAAO]

You certainly have a collection of unusual problems and it is unlikely anyone with have an experience to share with you.  Drusen both types hard and soft and different locations peripheral, mid peripheral macula tend to increase over time and with aging. In the location yours are they should not effect your vision.  If your physicians interpreted these as inflamatory granulomas I think they would be more more agitated and do a lot more testing. You will need to discuss it with them. Again this is so unique cannot generalize

[Sbocaja]

Thank you for your comment! I also worry that they have not continued testing (they have done 2 lumbar punctures, many MRIs, CTs, all the different eye tests and blood tests) but I think aren’t able to say definitively. I just worry about it being time critical, as I’m not on any sort of immunosuppressive medication at the moment (not my choice, neurologist took me off of the one I was on for MS which I think was helping, likely because it calmed my immune system down?) but have very high inflammation based on lab tests so feel as if it’s just waiting for another potentially detrimental event like transverse myelitis or vision loss like in the past!

Anyway, thank you for your comment! I may have to try to find other specialists that might know next steps.

[John C Hagan III, MD, FACS, FAAO]

best of luck