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Is anyone suffering with Anti MAG neuropathy?
Autoimmune Diseases | Last Active: Apr 7 7:47pm | Replies (43)Comment receiving replies
@mamacwb
Thank-you Carol very much!
I went to that site and read same. I didn’t find anything (Unless I missed it) that reflected any type of treatment that seems to work. Did I miss anything? If you don’t mind me asking, have you tried any treatments? Thks again for reaching out and please contact me anytime.
F
Replies to "@mamacwb Thank-you Carol very much! I went to that site and read same. I didn’t find..."
@fsr
Frank,
the treatments are pretty individualized. If it works for you , it may not work for someone else. That is what the IMAGine study is trying to refine. I have been getting IVG every 3 months, 3 infusions. I was very low on B12 so got injections to bring that level up, now am taking a lot of B12 and D3. My neurologist is trying to get my insurance to allow retuximab, My rheumatologist wants me try low dose naltrexone. I take 50 mg of Lyrica 3 times a day, acetaminophen and steroids for flares. My symptoms are not terrible, though my therapist thinks I have imposter syndrome! I am 76, newly widowed and active as much as l can be. I have a multitude of autoimmune issues so I'm never sure which pain is caused by what but the point for me is to keep trucking as muh as possible. I had 8 for Easter dinner after serving brunch at church that morning., and yes Monday was a bad day pain wise, but I made it.
Hang in there, maybe a treatment will be found that helps you.
c
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@fsr
Sorry I missed that you haven’t been to anyone yet. I too have gone the route of general neurologists Not much help. 🙁 Have been trying to get into Mayo, Johns Hopkins, Cleveland with no luck yet. Going to Vanderbilt and hoping. Glad to let you know if you like.
F