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Originally Posted by restorativepose
Wondering if anyone's been to Mayo Clinic in Rochester Mn and which doc they've seen and been pleased with. I've tried to self refer there twice to neurology and have been declined. My PCP says he will refer me, so was curious about physicians there.
History: I've seen two neurologists. One ruled out MG based on AChR alone. The current one started a Mestinon trial (which is working) but who will not give a dx of MG if the SFEMG is normal (haven't had that yet).
I did call the MD chapter and ask for an MG specialist name too. See what that turns up.
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Mestinon is one of several therapies for MG. You need to be given Immune Globulin by IV. I don't know why doctors are so scared of prescribing it. I've given over 100,000 grams IV with no problem. The side effects are rate related and most infusion suites infuse it way too fast. Check to see if there is a specialty pharmacy in your area for IVIG and ask the nurse manager for a doctor. In what state do you live?