Lindie, I think you were kidding when you said you thought MG wasn't an autoimmune disease. It most definitely is, unfortunately. Did they do the entire MG antibody panel (binding, modulating and blocking) and the MuSK antibody? Do you have your results? If not, get them.

There are other acetylcholine diseases that are not autoimmune called congenital myasthenic syndromes. They are caused by genetic mutations. Some people have adult-onset forms of them, even though the word congenital is used (because the gene is present since birth).

Most good doctors will indeed use a positive antibody only as confirmation not a negative result as an exclusion. Rheumatologists look at 11 criteria, among other tests like C3, to evaluate and diagnose lupus. Lupus, not unlike some MS patients, can occur in "flares," as do the antibodies.

You need a better doctor, which is your right to pursue. Second opinions are often necessary; "blind" ones too where they don't know you have seen someone else. Prejudice travels faster than a test result and most doctors will not disagree with an "expert" who says you are fine.

I've known patients who have been told they have MG, given Pred and Mestinon, then have their antibodies tested and given a SFEMG, which would obviously be negative, told they don't have MG and then have gone off of their meds and had the tests be positive! The way they diagnose MG sometimes is indeed utterly stupid.

Hang in there, Lindie, and get a better doctor. And if you don't have MG, they need to figure out what you do have!!!

Annie