Mrs. C,

I got Graves' disease 16 years ago, after the complicated birth of my daughter. I have been on and off thyroid suppressants ever since (I never had my thyroid radiated). Three years ago last spring, I went hyper again, after several years of being normal without the drugs. I went back on the suppressants. Then several months after that, I got my first MG symptoms, after I took care of five of my kids with the swine flu for three weeks but never got sick myself.

When I had Graves' disease, it took a while to diagnose. At the time I remember just one symptom of muscle weakness: I had trouble standing up again after kneeling down before entering the pew at church. When I got MG, the muscle weakness was much, much more severe. The first symptom I noticed was that my legs got so weak I collapsed to the floor quite suddenly when I was just standing there talking. MG affects my legs, arms and hands, trunk and back muscles, neck, and swallowing and occasionally my eyes.

My antibody blood test for MG came out negative three times. I also tested negative for MuSK and LEMS antibodies (you should be tested for those, too!). Then I tested borderline twice on a single fiber EMG. This is not the same as a regular EMG. In a single fiber EMG, the doctor inserts a thin needle and leaves it there for several minutes while he asks you to gently clench the muscle. Then my neuro sent me to an extra-special-specialist--a neurologist with a special expertise in MG. I had to travel. This doctor did his own SFEMG and said it was strongly positive.

If you know what it feels like to be hyperthyroid, and you don't feel like that now, it's pretty good evidence that you're not hyperthyroid, or at least not severely. Can't they just test the levels of T3 in your blood?

I hope you can get to a doctor who specializes in MG. Getting diagnosed with MG, especially if you don't test positive for the antibodies, takes a lot of persistence. Please know that MG is nothing to fool around with. If you can't swallow or have trouble breathing, that's a medical emergency.

Abby