Hi LBee,

I am sorry it is so difficult to find the help you need, along with the diagnosis! I have had a similar path with my myasthenia gravis. It is really hard for the doctors, it seems, when you don't have the positive blood tests. They want to have that! It's easier on everyone when there are a lot of positive results to prove that you have a disorder. But it is possible to have myasthenia gravis, even without the results. That seems to be my case, although it took me awhile to find a neurologist who would believe in me and provide appropriate care.

Prescribing Mestinon is actually a pretty safe drug if it is helping you, though. The first neurologist I saw did the same thing that yours is doing. He refused to prescribe it when I had negative test results, even though it was helping me. I had to find another neurologist.

If you have ptosis, another idea might be to visit your ophthalmologist, if you have one, and talk to them about your ptosis. If they witness it and confirm it, they might provide more support for the diagnosis. My ophthalmologist was one the first doctor who believed I had MG. The ophthalmologist might be willing to talk with your other doctors. It's a good idea to take photos of your ptosis at its worst to show the ophthalmologist, especially if it is fatiguable. I did that, and it really helped. I also bring those photos with me if I see new neurologists.

If your breathing, swallowing, and weakness continue to worsen, please go back to the ER again...or visit another area ER if you have choices nearby. I agree with everything that Annie said. She is so wise! We are so lucky to have her in the forum. She is right...do be sure to rest and take good care of yourself as best you can, much more than you think. I don't know where you live, but if you are having warm weather, also be careful to try to stay cool as best you can. Heat can make these symptoms worse.

Sending lots of good wishes your way,
Erin