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Originally Posted by lmba214
Didn't mean to take so long to answer NancyKay. Been busy with shoulder surgery, PT, pain clinic visits, applying for SSDI, etc. etc. I hope you are doing well as you can. My visit to the rheumy at Vanderbilt last spring was very disappointing. Nice guy and all but he wanted to blame ALL of my symptoms on fibro. Totally disregarded any previous test results. I give up on finding a Rheumatologist for myself, but found one for my son who is treating him for pain due to some kind of connective tissue problem.
I did get referred to another local Neurologist for arm pain. I'll take the anti-MAG and other previous test results, but I expect he'll just blow all that off like everyone else has so far. Guess I'm resigned to living with getting gradually worse. I don't have the energy or fortitude to keep looking for a doctor that knows about anti-MAG and/or is interested in investigating.
I hope you were able to get insurance to cover your treatments and that they have helped you feel better.
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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,