Hi. I'm so very sorry you're going through this. My story is very similar. I had Graves, which I treated with thryoid suppressants (PTU) on and off for 15 years. There is new evidence that PTU and methimazole can make MG worse. In my case, I suspect I had MG but the symptoms weren't apparent, and then the PTU triggered it and made it worse. http://www.ncbi.nlm.nih.gov/pubmed/1798220

I tested negative for all the antibodies tests. My first SFEMG was "borderline." My second was "mildly abnormal but not enough to justify a diagnosis of MG." I have no response to Mestinon. My neuro, upon my impassioned plea (I can't live like this! We have to do something!) sent me to another neuro an hour and a half away. My local neuro is the neuromuscular expert in the area, but the one he sent me to has a special interest in MG. He did a third SFEMG and diagnosed me on the basis of it.

The neurologist who diagnosed me was an neuro-ophthalmologist. See if you can get to one of those!!! There are many of us on this list who got a diagnosis from a neuro-ophthalmologist when we couldn't get one elsewhere. The strange thing is that I hardly have any eye symptoms, and the neuro-ophthalmologist insisted on doing the SFEMG on my face, around my eyes, anyway.

My understanding is that a clear response to Mestinon is evidence that you have MG, but not all neurologists would consider it conclusive evidence. A neuro-ophthalmologist might give you a very easy test you can do at home, which is to ice your droopy eye and see if it perks up. If it does, some neuros consider this to be very strong evidence of MG. There's also a tensilon test, where you're given a shot of a drug similar to Mestinon, to see if it has an effect on the ptosis. I think a neuro-ophthalmologist might be most likely to use these tests.

Abby

I am seronegative as well. My symptoms all respond to mestinon. The dosage you are taking is so small that it wouldn't do much for me. I take 60 mg 4X a day and a lot of us take more. I hope that you can get somebody that can help you.

I am so sorry about how you feel. I also feel a great sense of loss because I don't look as beautiful as I did with these wonky eyes. I am not young anyway, and my career doesn't depend on it, so it's not as great a loss as it is for you. The mestinon has given a lot of it back to me.

Abby is right about the ice cube test. It is very significant apparently. You need to find somebody that can figure something out. I think that an ophthalmologist is a good place to start. Be persistent and don't give up. And a word of warning; most of us here had doctors say we were crazy before they made a diagnosis.

I would try to get an increase in the mestinon dosage and use it.

I hope you feel better.

Hi Needananswer,
I fully agree with Celeste. I personally take 5X60 mg of Mestinon per day, one tablet every two, three or four hours depending on how active I am.
If the symptoms come back after about three hours, you might try to take one tablet 20 minutes before that and see what happens...
Reverse to the initial schedule if you notice anything abnormal.
Maurice.