Rach,
I'm am so sorry to hear that you are on the same roller coaster nightmare that I am on. As far as the lack of MG diagnosis for you so far, what testing have you had? Have you had the SFEMG yet? Who is exactly is the world leading expert? And whose to say that he isn't wrong?
I'm so tired of the arrogance of these doctors. "Expert" or not, they don't know everything about medicine and they can in fact be wrong sometimes.
This is so frustrating!!! I totally feel your pain.
Lindie