Hi Patricia,
Sorry you are having to go through all of that. Sounds like a familiar story unfortunately. Women have a much more difficult time being diagnosed with Myasthenia then do men. I was diagnosed by a GP with a positive blood test - went to a regular neuro who confirmed the diagnosis...he sent me to a specialist at the University. I went to the "specialist" who told me I was fine (by then I had 3 positive blood tests, but the "specialist" didn't like the lab they were done at so said they were invalid). I was on Prednisone, Imuran and Mestinon when I saw the guy...he then ordered a SFEMG but 'forgot' to tell me that I had to be off my medications for several days before the test. Then he took me off Prednisone quickly and repeated the test - said I was fine and that it was all in my head. I asked him for a referral to a Psychiatrist too - he started back pedaling then. He said he would refilll my Mestinon - I said, 'why would I take Mestinon if I don't have a disease?' He said it was safe and basically harmless medication and if I wanted him to he would refill it. I said that I wanted him to remove the diagnosis of Myasthenia from my chart, write a letter saying there was nothing wrong with me and to use a different billing code because if I didn't have Myasthenia he shouldn't bill as if I did. Then he said maybe I should get a second opinion...he referred me to Mayo where they confirmed the diagnosis of Myasthenia Gravis.

My advice, get another opinion...I love my local neuro - not an 'expert' but he listens to me and finds out things if I ask him. Keep track of everything yourself, get copies of your tests, have the doctors send you copies of their dictations. They often say things to each other that they don't say to you. Be sure that your tests are sent to a "reliable lab" - I had all of mine sent to Mayo rather than the local hospital. If you are on medications and scheduled for tests, find out from other MGers how long you need to be off before the tests are reliable. Schedule appointments as late in the day as possible so they see you at your worst. Do a lot of moving before the appointment - I try to time my Mestinon so that it is wearing off just before I see someone, I walk alot - if you can't walk, move your arms, chew gum, etc...wear yourself out - don't rest before your appointment.

I have probably gone on long enough...Hang in there! Keep believing your body. Turns out I do have something wrong physically - I may very well be crazy too, but that is not what brought me to the neurologist!
Gabe