I have four positive blood tests from different labs. I recently went to a new neuro for a second opinion on getting a thymectomy; my neuro won't do it and I want to do everything I can to get better. I went to the Head of the Dept at a very, very famous teaching hospital. Ivy League.

He said my blood tests didn't count because they weren't from the Mayo Clinic and that is the only lab he believes in. He did a single fiber EMG on the spot and it was normal. He said I don't have MG.

I've been in treatment for 2 1/2 years, hospitalized in crisis twice, and on IVIG every two weeks all this time. If I so much as miss IVIG I go into crisis. Mestinon helps me immensely, and I have all the hallmark symptoms of MG. My symptoms do not fit anything else, and I am a pretty severe case, though not the worst ever.

I was in shock! I asked him if the fact that I was on IVIG and had taken Mestinon would affect the EMG and he said no.

I went home and found several studies that showed both Mestinon and IVIG can cause a SFEMG to be normal, and I believe even the blood test too. (My Mayo test came back normal.)

I went back to my regular neuro, and he said I definitely have MG, or a form of it that hasn't been identified yet. End of story.