Dear winic1,

You may be surprised. When I saw a neurologist at a well-known teaching hospital near me, he said I did not have myasthenia gravis according to the test results. I, too, was worried he would tell me to stop taking Mestinon. However, he said to keep taking it, because it was clearly useful to me and it is a fairly low-risk medication.

Is there a myasthenia gravis support group near you? You might get in touch with them, and see if there are any doctors in your area that treat patients who have myasthenia-like symptoms but have negative test results. I am in that category. I have an excellent neurologist now, who is willing to treat me as a myasthenia gravis patient even though my test results have been negative. She has seen me at my worst, in the ICU, and believes I have myasthenia gravis. This is a regular neurologist in my local community, not at a teaching hospital.

I send you best wishes, and please take care of yourself and hang in there.

Take care,
Erin