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Originally Posted by Stellatum
Hi, Jaimee, and welcome! Boy oh boy, do I ever know how you feel. It has meant so much to me just to be taken seriously, and my biggest fear has been that the doctor would conclude that it's "all in my head."
I was surprised to hear you were tested for Meniere's. I thought for a while that that's what I had, because I was having trouble keeping my balance (though I never had vertigo). It took me a long time to understand that my tiltiness was due to weak side and back muscles. I start tilting at the waist, and have to sort of stagger so as not to fall over, especially while walking. This isn't really ataxia, or disequilibrium, as I am my doctors had thought; it's just weakness of the muscles that hold you upright.
I hope some of our really knowledgeable members can answer your questions about what to expect from the neurologist, and whether the tests will be accurate if you're not in the middle of a real flare-up.
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Do you know if nausea and vomiting can be part of MG? When I first got sick, I woke in the night after having taken a muscle relaxer (I was having some back pain) with horrible vomiting and feelings of vertigo. When I woke the next morning I could barely move my left arm and leg. It felt like there were weights hanging from them. I continued with symptoms for about 6 weeks. It doesn't happen often anymore, but I do experience feelings of queasiness and disequilibrium on occasion and even sometimes an unexplained bout of vomiting... It's strange because I'll think I have a horrible stomach virus, but then nobody else in the house gets sick and I continue on with muscle weakness, etc. Who knows? Maybe this won't be the answer either, and if it isn't, I think I need to just be done with the doctors. I just get frustrated to have no way of explaining or dealing with it all.