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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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HI jvaagen....welcome!
May I ask how was your MG diagnosed 9 years ago? Have you or are you on meds for MG? Poke around this forum and you will find many folks who are neg on most all of the blood antibody tests (me) and some of the electorde tests (I was borderline). But we still have MG! My neuro did all the tests and dx'd me on clinical exam and my improved muscle strength after a monitored dose of Mestinon. That was almost 5 years ago and I have been doing ok with only Mestion (I'm very lucky) See what your new neuro says and how he/she wants to proceed - but don't give in to the 'your tests are negative so I really don't think there's anything to worry about' brush off. Document your weakness - what - where- when - how long and use that info when questioning neuro as to what the cause could be. Pictures are good if you have what I call the 'melting face'. You have to be a bit diplomatic - but persistent with neuros. (Many have few interpersonal skills and even less patience.) Good Luck and pls update us on outcome. |
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