Should I try Vyvgart?

Advice Request

My local neurologist believes I have seronegative MG-he initially saw me in the hospital last year during a presumed crisis and then diagnosed me via a positive RNS right after I got out and was still highly symptomatic.

Recently I went to see a neuromuscular specialist in a different state who thinks I don’t have MG (negative SFEMG- they did only test one non symptomatic muscle though..) She believes I have small fiber neuropathy (she was correct on that.. the biopsy came back positive) and my weakness is not true weakness but just fatigue from SFN associated conditions (maybe dysautonomia and/or Sjogren’s.) She pretty much wrote off my ptosis, significant response to Mestinon (felt like a magic potion the first time I took it), and my severe breathing difficulties (she said it’s just subjective even though it’s why I was hospitalized..?).

Anyway the first neuro finally got Vyvgart approved which is what I’ve been dreaming about this whole last year while trying to claw my way back to some semblance of normalcy. But after seeing the specialist and being told bluntly that I don’t have MG I’m second guessing doing it. Part of me wants to just try it and see how it goes but I don’t want to take something needlessly/be wasteful of resources. Has anyone else had the opportunity to do Vyvgart while they’re not 100% sure it’s MG? Is it worth trying it? Maybe it would help me know for sure depending on how I respond?

Posted Sep 29, 2026, 2:27 AM UTC

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