Hey I'd really love to go into a short (although not necessarily immediate) exchange with you. I have MS diagnosed, recently died (not kidding) possibly due to PROMM and also yet another neurological skin disease and am wondering if my head should maybe be scanned differently now in this context.

[–] Neurologist@mander.xyz 5 points 2 months ago* (last edited 2 months ago) (1 children)

I’m sorry I really shouldn’t be giving medical advice. It’s been a long time since I studied neurology. I’ve spent the past decade only on post viral diseases like ME.

But please please find yourself a doctor that listens and cares if that is possible. Because it clearly sounds like you need tests and you need a doc thats available for you. Maybe join some local MS support groups and ask if anyone has docs that do a really good job and try from there.

I’ll tell you this as a doctor. I would stay the hell away from some of my colleagues. Not every doctor is anywhere near good at their jobs. Some don’t care, some barely passed and don’t want to learn anything new, some like to always assume their patients have psychological problems. Find yourself a good doctor who is proactive and cares, and everything will be so much easier. Sending you good luck.

[–] Strider@lemmy.world 1 points 2 months ago

Thank you for your answer and empathy.

Luckily I am already in good care in general and also medically treated (luckily it's in Europe otherwise I'd be broke and dead).

So regular checkups are there already. However what I miss is the deeper investigation, which might even provide data to research.