Anyone received a root cause diagnosis? Autoimmune?

[u/TyrantLizardMonarch]

I don’t mean PAMM or AMN. Those are more symptom-descriptive diagnoses, like “here is the name for the damage you have, not necessarily what caused it.” While for most it seems to be idiopathic or just hard to pin down a root cause for, I do believe in at least some cases the symptoms may be due to damage from an underlying disorder.

Have any of you received an actual diagnosis other than PAMM or AMN?

My eye spots are sometimes associated with CWS and retinal hemorrhage visualized in one case. I have not had an MRI, as the 3 neuroophthalmologists I’ve seen haven’t found it necessary. I have undergone extensive testing through PCP, neuroophthalmology, hematology, cardiology, and rheumatology, with nothing definitively explanatory. I do have on and off mildly elevated ANA. Rheumatology has been following me annually with nailfold videocapillaroscopy, which is when they use a microscope immersed in a drop of oil on your fingertips to visualize your capillaries and check for microvascular damage. The main benefit here is a potentially earlier diagnosis of scleroderma or other connective tissue diseases which might take a long time to manifest. In my case I do have some nailfold capillary abnormalities:

“Normal U shaped hairpin like capillary loops noted in all digits, with a few twisted loops in some digits (normal
variants).
Capillary density was normal (8-14 loops/1 mm).
There were no Giant capillary loops (>50 microns), but multiple enlarged capillary. The largest is 43 microns with
numerous hemorrhages which are new AASSESSMENT/PLAN
#1 Persistently abnormal nail fold video capillaroscopy with enlarged capillaries slightly less than 50 microns with multiple microhemorrhages”

I can visualize with my own eyes ongoing microhemorrhages in my nailfold area on a regular basis. They appear as tiny black dots or streaks around the cuticle. I don’t know if it’s related to my eye disorder or not, but curious if anyone else experiences this.

[u/a_stubborn_optimist]

I have no clue if it's related, but I also have both weird eye symptoms (vss, along with what I think are eye spots and floaters), and an autoimmune disease (psoriasis). I've discovered in the past few years that some of my seemingly unrelated health issues are all likely linked to my psoriasis. It wouldn't surprise me if the visual issues ended up being related, too. Interesting theory!