I have an appointment with my neurologist coming up. He is the area specialist in diagnosing neuromuscular diseases. He doesn't think I have MG because: the blood tests are negative (I've been tested twice for AChR, once each for MuSK and LEMS); the SFEMG is only mildly abnormal; and my worst symptom is weak truncal muscles.

I saw him six months ago, and he only made this next appointment for me because I requested it.

He said the only place he could refer me is Mayo, but he doesn't recommend that. He doesn't think they'll have anything more to say than he does. He thinks that my other tests (serum CK, EMG, and others) rule out other diagnoses, and without a diagnosis, I can't be treated except with Mestinon, since it seems to help. I certainly can't be treated for an autoimmune disease unless there's some evidence I have one.

Here is what I'm thinking of saying:

I need some help here. My life is strongly affected by this disease. No one has offered me anything but Mestinon. Have you discussed my case with your colleagues? Is there some sort of occupational therapist who could help me? Could there be some sort of brace or device that could help me walk? How are new diseases discovered, anyway, if the specialists only diagnose diseases they already know about?

I really don't know what to do next. I live near Providence, Rhode Island.

Thanks.

Abby