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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Junior Member
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Neurologist said I've finally given her enough to refer me to MG Clinic at UC Davis - 2hr drive. She thinks I have MG...but with some doubt, I think mostly because all tests are negative, so far (blood, emg). But I respond to Mestinon. Why all the BUTS with this disease? Can we please close the door on doubt? I'm feeling like the kid who can't pass the SAT's but knows everything on the test.
I had a whole list of questions for her ---she said UC Davis will answer those and handle my long term care. She's sure? No other meds and no increase in Mestinon. And to boost my confidence the nurse tells me UC Davis MG Clinic hasn't been accepting their referrals. Um, why is that? HUH. But I don't want to put energy into that. POSITIVE MOJO TO UC DAVIS...YOU WILL TAKE ME TO YOUR LEADER! Can we call this a milestone in what seems like a long, exhausting, heart breaking journey? Mantra: What I need I have. Including all the support. What shall I do to prepare for my appointment? Pictures? Medical Journal? Get a note from my shrink???! What will they do now that I'm on Mestinon? Thanks! Jen |
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