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Is anyone suffering with Anti MAG neuropathy?
My husband was diagnosed 1/2 years ago and the disease is progressing. He was taking Gabapentin and has just started lyrica. In addition he will be starting IVIG treatments.
We would benefit from anyone s experience.
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@wcooke
I read the anti-mag website. .
My feet are affected but not my hands. They call it Paresthesia. (Nerves affected by unknown cause). But at my age the arthritis is making the hands hurt. A friend has gMG. That affects the whole body. Hang in there!
@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
Carol,
Oh my… thank-you for sharing. You have suite a bit on your plate for sure. I will keep you in my prayers and hoping things improve in your world. Please reach out at anytime.
F