Hi, Christine. I'm sorry you're having such severe symptoms and that the diagnosis isn't clear.

Can you be more specific about the tests? First the blood tests: MG is caused by antibodies, but there are three different antibodies commonly tested for. The most common of these is the AChR antibodies. Some people who test negative for those have the MuSK or LEMS antibodies. A neurologist should test you for all three. You should also know that a significant number of people with MG test negative at first, and positive later, or sometimes keep testing negative. Do you know if you've been tested for all three kinds of antibodies?

Second, can you describe the nerve test? Do you know if it was just an EMG or a single-fiber EMG? A single-fiber EMG is a lot better for testing for MG. If it was a single-fiber EMG you had, it would be like this: the doctor would insert a needle into your muscle (arm, thigh, or face, usually) and then ask you to clench the muscle slightly for maybe ten seconds or so while the needle stays in.

If you didn't have all three blood tests and a single-fiber EMG, I would suggest finding a neurologist who specializes in the diagnosis of neuromuscular diseases. There are many of us on this forum who have never tested positive for any of the antibodies, and who were diagnosed by single-fiber EMG.

Abby