I think about this a lot. I am seronegative (X3, and negative for MuSK and LEMS). My first two SFEMG's weren't conclusive. On top of that, I have no response to Mestinon, my eyes aren't affected, and my early symptoms were very atypical: the weakness was mainly in my sides, so I swayed back and forth severely when I walked. The Boston MG specialist said, "I've seen about 300 patients with MG, and none of them walk like you."

Like those of most people with MG, my symptoms come and go. Most of the time my strength seemed normal when the doctors did their various tests (having me push on their hands, etc.). They had to rely on my description of what I was like when I was weak.

I sure seemed like a good candidate for a "conversion disorder" diagnosis! To top it all off, I'm female. So, what made the difference? Why did none of the neurologists I saw (five or six of them) suggest that it might be psychological? Did I somehow make a good impression on the doctors? Is there a sort of personality that doctors don't trust that I don't have? Or did I just happen to get really good neurologists? It's a mystery to me.

When I read stories like the one just posted here (Mycha's story), I feel devastated. She has blood tests to prove she has MG, and it's well known that anesthesia can provoke a crisis. I don't understand how this could happen. I don't understand why it didn't happen to me. I'm so sorry for this poor girl, who has been through so much. When I was waiting for a diagnosis (it took 15 months) my biggest fear wasn't that I had ALS; it was that I would be dismissed as a head case.

Abby