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Anti Myelin Associated Glycoprotein Antibodies

Neuropathy | Last Active: Oct 25, 2023 | Replies (11)

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@artistwagoodi

Thank you so much for responding!
The studies on Rituximab have been so small that it isn't even listed on cochrane.org, a very respected organization that follows trials for all illnesses, most likely because there's so few of us. It's a very rare disease. Out of all of the CIDP-like disorders, only 5% have Anti MAG Antibodies. Of that 5%, 90% are male and 10% are female. So basically there's no money in it for the drug company to our detriment.
I believe positivily in sharing our experiences. Maybe we can help each other 😊
I'd like to start a separate chat for people with Anti MAG Antibodies. My first post wasn't worded so well as to attract the attention I'd like to see. May a new post with a larger title?

I believe the Anti MAG Antibodies started 20 years ago in 2 toes.
However, my diagnosis came late last September.
Since then, there have been countless tests, blood work ups, X-rays, CT scans, biopsies, Hematologists, Oncologists, Neurologists, and more. They're also watching for lymphoma, a cancer that can be associated with this disease. I had my first 4 Rituximab infusions in November and December with a break for my first COVID-19 infection. I've seen no progress but, as you, the doctors have said it may take as many as 6-10 months to see a result. Meanwhile, I keep masked for my immuno-compromised body.

Since muscle and strength loss are a large part of the progression of this disease, I've decided to keep working on walking, strength training with barbells and aquatic exercise. I have been loving the aquatic exercise because, I feel so safe in the water. I can almost follow the young instructors step of step, something I can't do on land. I can balance on one foot for over 1/2 minute! However, I'm missing the boost of energy I've had in the past after exercising for a few weeks. This may be part of the disease. I'm not going to let it stop me, though.

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Replies to "Thank you so much for responding! The studies on Rituximab have been so small that it..."

Yes, I too have muscle and strength loss, with fatigue. And I also walk daily 20-30 minutes, lift weights 3x/wk, and do rehabilation balance exercises I learned the other 3 days. Have been taking Sundays as rest day. Have found that exercise bike in place of walking doesn't give me the leg/general fatigue that walking does---but rather do walking to be outside. Sounds like you have a good exercise plan and positive attitude/approach. Will keep you posted in future on whether I see results after my upcoming 4 bi-mthly Rituximab infusions.

Hello! I’m 76 years old woman and I was just diagnosed with anti Mag. Originally it was just CIDP and my neurologist started me on IGIV. My original mag test was negative, but my blood was also sent to another lab ( more trustworthy university research lab) and it came back positive. Both tests done by the same technology (western blot), still wondering how it’s possible to have such opposite results. They continue with the IGIV treatment- just had the second treatment, once in 3 weeks. My symptoms started just 4 months ago… was healthy before, walked 4 miles a day etc. Such a rare-rare disease.. Out of nowhere…