However;I've read posters in the past, say over and over again, how this neuro was awful, and after seeing 10 different neuros who all say the same thing, " I don't Have Myasthenia, so I don't want to go and find another, they're all bad" Well, just maybe the person doesn't have MG, but something else that has many of the same symptoms. At some point we do need to understand that maybe it's something else, and just maybe we need to trust that the experts really do understand, and just honestly don't believe the person has MG.

Lizzie: I'm probably one of those people that you're referring to who went to several different neuros, stubbornly insisting that they were wrong and I was right. I understand about what you're saying when you say that people need to keep an open mind about their diagnosis. I absolutely agree that that can keep people from discovering what's really wrong with them. I worry sometimes when I read some stories on this and other forums that people are cutting off other possiibilities. On the other hand, I just want to point out that neuros can be wrong. Call me stubborn, but I'm glad I persisted until I finally saw an mg expert who was able, in 5 minutes, to give me an mg diagnosis. I went to 5 neurologists who all told me that I didn't have mg, despite having two positive antibody tests. BUT, they also told me facts about mg, actually absolutely insisted on facts about mg, that I knew were just plain wrong. Things like: there are a lot of false negatives with the antibody test, you don't need a cat scan because mg has nothing to do with the thymus or any type of cancer, mg symptoms never change - once you get a sypmtom it's constant and never gets better or worse, SFEMG is not an appropriate test for mg, SFEMG is an appropriate test for mg and those results trump antibody tests and only need to be done on one muscle, if you have side effects with mestinon than that's a strong indication that you don't have mg.

I was discouraged, scared to death, dismissed, sneered at, and almost everyone I knew thought I was crazy. But my philosphy was that when I met a doctor who knew as much as anyone with a good two hour google search under their belt and that doctor told me that I didn't have mg then at that point I would believe it. But until then I wouldn't give up.

So yes, I completely agree with you. It's important to keep an open mind, listen to the neuro, consider carefully. But if someone really believes that they have a disease and really after very careful consideration and research still believes then they need to listen to their own instincts. Keep trying and don't let yourself give up.

I have a feeling that you live in an area with very good neuros. I think that's wonderful - I wish I did!!!

Rach: I wish you the very, very best. I hope that they can find something in your upcoming tests. From what I've read recently, I think it's a good idea to wear yourself out, even though it's going to be difficult. Good luck!!!!!

Ally