DADS Anti-MAG: Navigating the Challenges of a Rare Neuropathy

[@juliehurd5740]

I also have MAGS. However, I never was on IVIG. MY MAG antibodies were at 29,000, normal range is 1-999. I was put on RIITUXAN which is a form of chemotherapy. I was diagnosed in NYC. I GET Rituxan every 6 months. I’m now at zero . It took 4 years to get < 999This is expected to give a chance for the Mylan sheath to heal. Mags is very rare in woman 5% have it. Mostly it’s found in men. I also experience tremors and shaking at times. I can walk now but it’s not always easy. I love the quote “ a box of chocolates, you never know what you’re going to get” each day can be different.

[@kimberlyhennessy5903]

I have MGUS IgM and neuropathy and loss of balance. My Oncologist tested me for Anti MAG. I am higher than normal but not high enough to be treated. I really appreciate your story, it is an "invisible" disease, I also do not like the "you look fine" comments, so invalidating to our problems. Wishing you the best

[@brockmckraken]

I have an identical diagnosis in 2019.. CIDP anti-MAG DADS-M I have been given ONLY Gamunex-C for nearly 3½ years and have very poor strength in my ankles, no use of my toes. At this point, it's a maintenance dose to prevent symptoms from worsening. No other treatment so far. I am attempting to add Ratixumab to my meds. I have had a very difficult time with my legs and even lost ½ my progress during a 4 month insurance issue lapse. I am amazed you experienced a full (hopefully permanent) recovery with your treatment plan. This gives me hope as I need change in that area. I can barely walk with a cane, 5 years ago.. a fully functional, strong man. It is very scary to me.

[@dragonfly111cute]

Thank you for your experience

[@recurve100]

It would be good to know if he can run again, or has the condition just stabilised with the existing neuropathy he had.

[@TEPO--]

Thank you.