Feeling really discouraged and down..
So I have been seeing a neurologist who diagnosed me via a RNS test in Oct 2025 right after being hospitalized for a myasthenic crisis. The neurologist is quite old, a little scattered, and seems a bit behind on some things but he was who consulted while I was hospitalized and the first to really take me seriously. I live in an area with little to no neuromuscular specialists so I flew to my home state to see a specialist for a second opinion on treatment (my neuro had me on ER Mestinon and Cellcept and told me I was not a candidate for Vyvgart or a thymectomy and that IVIG is only for pressing situations.) Well I saw the neuromuscular specialist and they didn’t care about my notes/history and wanted to do all their own testing and had me stop Cellcept. Which was fine. But they couldn’t coordinate any of the testing so I’m having to fly in multiples times (across the country/from a non contiguous state.. obviously it’s expensive.) Understandable I guess. They only tested for AChR binding antibodies when blocking and modulating are the ones that have historically been borderline for me, but that was okay I guess since they’ve always been negative. I went in today for the RNS (the SFEMG they couldn’t do until Aug so I flew in just for this test) and it was negative/normal.
I’m just feeling so discouraged.. I spent a year trying to get answers and no one listened to me and I ended up hospitalized because of it and still am struggling to stabilize and return to regular work. And now that I’m finally diagnosed/have an answer, this specialist that I went to for what I thought was a second opinion on treatment options is making me redo all these things and all the while kind of treating me like I’m exaggerating or making things up it feels like- just small comments/a vibe I’m getting. When I first saw her I told her I really struggle to breathe (can’t bend over to put on shoes, etc.) and she had me do the single breath count, which was 12, and she just shrugged and moved on.. things like that. Sorry for the rant, I’m just really down. My symptoms seem pretty straightforward and I respond very well to Mestinon (like impaired vision, ptosis, struggling to walk this AM after 48 hours sans Mestinon for the test and afterwards within 20 min of taking it everything was much improved/I was walking near normally.) There is nothing else out there that would mimic all my MG symptoms, put me in the hospital for breathing issues, and respond to Mestinon.. right?? But now they’re making me feel crazy and dramatic and like I should be second guessing the diagnosis. I don’t even think I have a question hahaha I just hate this. I’m 33 and just want to work and have a baby. 😢