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Originally Posted by Mamasucci
Hi! I live in the Chicago area and see a neurologist at Washington University in St. Louis. They treat Anti-mag. I have mostly sensory, no muscle. I have been seen 3 times. Mostly they check my balance and strength. Because I am not being affected yet in these area, I do not take anything. My feet hurt, but not bad enough for treatment. What does help when I can't sleep due to pain is lidocaine patch. I only use once every couple of weeks. Do not like ingested drugs, so no Lyrica for me. I was seen 6 months apart and now will go back in 9 months unless a change in balance or weakness etc. I swim and walk and do a lot of stairs. The doctors at Washington University Neuro-Science center are very knowledgable about Anti-Mag. They will not blow you off. Good luck,
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Thanks for your info mamasucci! Their website has some good information on neuromuscular diseases and I've wondered about their clinical care. Nice to hear from someone going there and that you recommend it. I'm in the southeast, so going there would probably be doable.
I haven't tried to find a new neurologist yet, but probably should. The only good one I've ever seen, who ordered the anti-MAG test, is retired. The last one I saw was referred by my ex-Rheumatologist for forearm pain. NCV testing showed carpel tunnel and that was that. Still so many unanswered questions.
Hope to hear how you are doing in the future and that you continue to function without resorting to medication.