Hi, and welcome. I'll tell my story. My first symptoms of MG were atypical (hardly any eye involvement, and weakness mostly in my sides). I tested negative for the antibodies (and MuSK, and LEMS). I had a single-fiber EMG that came back "borderline."

My symptoms got worse, and they tested me for everything else they could think of--nothing. So I had more blood tests (negative) and another SFEMG ("mildly abnormal, but not abnormal enough for a diagnosis of MG").

Then I got even worse, and told the doctor: we have to do something! So he referred me to a neurologist in Boston (I live in Rhode Island). He specializes in ocular myasthenia gravis. He did a stimulated SFEMG on my face (even though I have no ptosis, no double vision--just a little eye strain now and then). In his opinion, it was very clearly positive. He diagnosed me and sent me back to my regular neuro, who accepts the diagnosis.

The process took 15 months from my first symptoms to diagnosis. It was a rough time. It's terrible not to know what's wrong, and even worse to be doubted--and the worst of all is doubting yourself. But from other stories I've read, I know that 15 months is excellent for someone in my position. There are people here who have waited decades for a diagnosis--even though when they were finally tested for antibodies, they came back positive.

Would you like to tell us about your symptoms?

Abby