Is anyone suffering with Anti MAG neuropathy?

@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

@mphaddican
Marilyn
What treatment was your husband prescribed by Dana Faber doctors?
Has his condition improved?

What were his symptoms?
Thank you

Ok. My husband was treated locally before he found out what he really had. They told him to drink more water.
The tell tale sign was his IGM blood test was very high. He went over to Dana Farber and had a bone marrow test. From that they concluded he had Waldenstrom with an additional gene which only 40% of those patients have. They set his medicine for infusion with that in mind. We came home and were able to have medication locally under the Dana Farber infusion prescription he had the infusions two or 3 times a week and it took about an hour from October-December during Covid. He was developing Neuropothy before treatment but that got worse. He can walk though.
The treatment brought his IGM to normal range. He has a blood test every 6 months and IGM still normal. I am not sure of infusion but it may have been bentamustine and refluxamat. (Sp)Not certain about the medication. They fixed his medication for he has that 40 % gene that makes the medication more exact.
He is doing well. Eating, sleeping well and travels to see daughter and grandchildren out of town.

Thanks to all the dedicated research scientists!!!
Marylyn