I am searching for a diagnosis. I've been on immunosuppressive drugs for years. My PCP says I need them. My rheumatologist says I need them. I recently sought an opinion from UAMS and the "head" of the rheumatology department there says I should stop taking them, which I find a little odd since they never even took a blood sample. But this has been my case for years, doctors disagree and give conflicting direction. I initially had extremely red eyes. The whites of my eyes turned blood red, so much so that I would frighten small children when I looked at them. I was prescribed immunosuppressive drugs and everything seemed to go well for over ten years. Last year, while on hydroxychloroquine, my ophthalmologist noticed some changes to my eyes and recommended I discontinue hydroxychloroquine. Due to Covid, I was several months without any immunosuppressive drugs. During that time, my eyes again became inflamed and I noticed a dramatic reduction in my sight. There is some visible "scarring" on my left cornea. Subsequent testing confirmed additional damage to my eyes. That's when I sought consultation at UAMS and, thinking this was an autoimmune issue, visited the rheumatology department, after months waiting for my appointment. I discussed the UAMS recommendation to discontinue immunosuppressive drugs with my PCP and rheumatologist who advised against it. So I'm still taking drugs hoping it will at least slow the progression of my loss of sight.

Trying to self-diagnose, I found Autoimmune Retinopathy which sounds like an avenue to investigate. But my question is this: Where can I get an expert evaluation hopefully leading to a reliable diagnosis? My PCP mentioned the Mayo Clinic in passing, but no follow up ever occurred. So can I contact the Mayo Clinic directly? And with whom should I speak?

Any advice would be greatly appreciated.