Dear winic1,

This is the situation I am in also. Even though I've had tests, all of them have been negative. My symptoms seem very much like myasthenia gravis. Mestinon works for me, and so does IVIG. It is tough without the positive results to tests, which doctors really like to get. However, if you have good doctors on your side, hopefully they will still be willing to treat you anyway. Mestinon is a pretty safe drug. If it is helping you and you are tolerating it okay, then hopefully your doctor will be willing to continue prescribing it. In my case, I kept ending up in the ER and ICU with severe breathing difficulties and weakness, which seemed a lot like a myasthenic crisis. It was scaring my doctors (and me). So they recognize that, even without a formal diagnosis, I need some sort of ongoing treatment. It is a difficult thing, though, and having the right doctors really helps. I hope your doctor will keep prescribing Mestinon for you. Thinking of you.

Take care,
Erin