Anyone with Anti-MAG neuropathy?

EDELSTEP · 01-15-2011, 08:02 PM

Quote:

Originally Posted by NANCY W.

Hello, Edelstep. After a couple of false starts, the nuro dept was able to get my treatments mostly covered. I believe it was coded as chemo therapy -- perhaps the secret is how your dr. or hospital codes it. Wish I could be of more help -- but the hospital didn't explain and I didn't ask. Good luck. NancyW

Hi Nancy,
Thankyou for responding. I went to Mt Sinai Jan 13. The Director of neurophysiology Dr David Simpson says I have classic Anti Mag nueropathy. He wants me to see a Hematologist because I also have family hx of antiphospholipid syndrome. I also have to see a Rheumatologist because I have severe Reynards syndrome. All of these are autoimmune disorders. Has anyone indicated that this neuropathy could be genetic? Could our children get it?
Also Nancy, How was your Chemo given? How long was the treatments? What were the side effects?
Thankyou so very much for responding. It is so great not to feel so alone.

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