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

Appreciate the input. I'm just starting on this strange trip which seems to inhabit a very small corner of the neurological issues field. I'm curious if you are getting help from a Neurologist or a Hematologist? It seems both suggest the other will determine a treatment plan. So far have pain in both feet, now tingling and pain starting in both hands. Gabapentin seems to take the edge off but is not a solution, even at high doses.

I think we are in the same boat without a paddle. My neurologist placed my PROBLEM in the hands of my Hematologist. As I haven’t officially been diagnosed with anything as of yet. But with the tingling in my hands and feet, and my feet feels cold to me but not to the touch. Is a test really worth it, but of course Doctors can not diagnose without a scan or blood test.

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.

Hello,

I’ve only had the one Rituximab treatment. My conditions have improved, but a lot of that is thanks to duloxetine, or Cymbalta, which reduces (not completely remedies) the tingling symptoms. This allows me to move and exercise in a more productive way. My neurologist has said that he would like to refrain from further Rituximab treatments until I report issues with balance and falling, which doesn’t seem like it will be a near-term problem.

Hope that helps, take care.

Hello @savomic, Welcome to Connect. While we wait wait for others to share their experience, I thought I would share a couple of articles for members not familiar with Distal Acquired Demyelinating Symetric with the M protein (DADS-M).

----- " The pathology of anti-MAG positive DADS, involves deposits of IgM and complement, with splitting of myelin lamellae resulting in demyelination and conduction block. The response to treatment in DADS with paraproteinemia (DADS-M) to the first line agents effective in CIDP is suboptimal (1, 8). Initial reports demonstrated a 30% response rate with minimal subjective improvement in patients with DADS-M while patients with DADS-I or CIDP had nearly 70–95% objective improvement with conventional IMT (6). About 70% of patients with DADS-M in this cohort had anti-MAG antibody positivity, confounding the results as those with anti-MAG antibody do not respond well to first-line CIDP treatments."
-- Treatment Approaches for Atypical CIDP:
https://www.frontiersin.org/articles/10.3389/fneur.2021.653734/full
----- "The presence of MAG antibodies is often linked to a rare demyelinating neuropathy with poor treatment response known as distal acquired demyelinating sensory (DADS) neuropathy. In some cases, reaching correct diagnosis through clinical and electrophysiological evaluation alone can be difficult due to overlapping features, or when patient evaluation occurs later in the disease course. Incorporating MAG antibody testing into the diagnostic workup can help identify the correct diagnosis and exclude patients with treatable immune-mediated neuropathies."
-- MAG - Insights - Mayo Clinic Laboratories:
https://news.mayocliniclabs.com/neurology/autoimmune-neurology/neuropathy/demyelinating-neuropathies/mag/
How are the Rituximab treatments working so far?