Quote:
Originally Posted by mom2mba
I was diagnosed by a neuro specilaist in the hospital. He said based on my symptoms he thought he knew what it was but wanted to do a test to make sure. He used the tensilon test and I responded. He started me on Mestinon in the hosp. and I responded to it also........That has led me on a merry-go-round of testing. All other tests have been negative so now none of the neuros around will treat me and my PCP says it must be all in my head. You are lucky you have a good neuro.  |
I'm so sorry your getting the run around and now they say its in your head.
I don't understand how they can diagnose you with Mestinon and a Tensilon test, then take it away? I thought the blood tests and even the EMG, didn't rule out MG. And from what I've read in the posts, even a SFEMG doesn't always pick it up the first or even second time. ???
Does it effect your eyes? Have you seen an ophthalmologist while you're symptomatic? (that's what got the neurologist to listen and take me seriously, from what I could see). Have you gone to an MG specialist? I bet you've tried many things. I hope this forum helps you find a path that will get you to a helpful doctor. My heart goes out to you.
Don't give up!! This is your health!
I know once they tell you its in your head, the doubt can really get to you. If you still have symptoms, maybe its time to take a chance with yet another doctor? I switched GP's to a "hippie" MD who really listens. I feel loved. LOL. And he believed me right off. I'm hoping he's also a good doctor. So far, I think so. He's the first MD to take me seriously about all my eczema and allergies and extreme sensitivities and put it all together with autoimmunity. MG or not, he doesn't think its just in my head. He could tell something ain't right.
Anyway, I wait to hear from UC Davis MG Clinic.
Jen