← Return to DADS-M Neuropathy with Anti-Mag Antibodies...anybody else?

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@h37

I also have DADS with Anti-MAG. I began experiencing symptoms in 2018 and was diagnosed in 2022. I found the article "Anti-MAG neuropathy: From biology to clinical management" by Andreas Steck (the forum won't let me post a link) really helpful as I was trying to learn more, though it is field-specific reading and I understood only a fraction of it.
MAG stands for myelin associated glycoprotein. DADS-M patients have antibodies that attack this glycoprotein.
In addition to the physical symptoms (symmetrical numbness and tingling, balance challenges, etc.), elevated levels of IgM are a marker, in my case 70x the upper limit.
I’m approaching six months since my first Rituximab treatment, which was four infusions over four weeks. Some Youtube videos about the experience helped calm my nerves about the treatment. I experienced only a slight allergic reaction to the first infusion, and that was resolved with a little extra Benadryl; otherwise I was just a little fatigued the first day.
There has been some improvement for me in the tingling, and there is slightly more sensitivity in areas that feel numb. That said, some days it feels like nothing works, and some weeks it feels like improvement has faded. So it isn't a total fix for me, but I'd like to keep trying it for now. Measuring the effectiveness of Rituximab requires bloodwork that happens several months after the treatment because the growth/deterioration of myelin happens so slowly. I’m told that if the bloodwork points to progress, a maintenance dosage of one infusion every four to six months is recommended. Don't know which direction my bloodwork will take me.
Before the Rituximab, I found a little success managing symptoms with sauna, and I still use it regularly. The buzzing/tingling reaches a very high level while I’m in the sauna, but after a cold shower the rest of the day is usually calmer.

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Replies to "I also have DADS with Anti-MAG. I began experiencing symptoms in 2018 and was diagnosed in..."

Hello @h37, Welcome to Connect. New members are prevented from posting links for a short period of time to prevent advertisers from spamming our community discussions. Please allow me to post the link for you.
--- Anti-MAG neuropathy: From biology to clinical management: https://www.jni-journal.com/article/S0165-5728(21)00252-6/fulltext.

@jeffls and @maple1939 have discussed Rituximab treatments in another discussion and may have some thoughts to share with you. It's good to hear that it provides some relief for you. The Foundation for Peripheral Neuropathy is another good resource for finding treatment options for neuropathy symptoms. Here's the search results for Anti-Mag:

https://www.foundationforpn.org/blog/?wpv_view_count=7973-CATTRb0513ddce477b648471928c69da4118b&wpv_sort_orderby=post_date&wpv_post_search=Anti-Mag.

Have you tried any complementary or alternative treatments like those listed on the Foundation for Peripheral Neuropathy? - https://www.foundationforpn.org/living-well/complementary-therapies/