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

I’m getting the 4th and last treatment on June 7th before I see the Hematologist again. Walking, balance and blood tests are stable but the pain and fatigue are worst. Not sure what to think about Rituximab but did not improve for sure.

Thanks for your response. MGUS was diagnosed and like you just needs to be monitored at this point. I was then diagnosed with DADS but didn’t realize at the time there are different versions of that. Have just completed my 2nd month of IVIG therapy with no noticeable change as yet. Will have to get more info about my DADS when I see neurologist next month. Suspect this all began with Pf Covid v’s but no confirmation of that as yet. I can say that before v’s I was perfectly healthy, active with no health issues. Now my life is upside down!
Wishing you all the best on this crazy journey!

Hang in there, sounds like the treatment has given you your balance back and that's huge! Take the win. I was real tired when I went through the Chemo. I'm sure the fatigue will go away once you're finished with the treatments.

I have DADS with Anti-Mag -- and I firmly believe it from my Pf Covid Vac's... but no doctor will go against the establishment and support me in this.

I am starting Rituximab once the insurance hoops are jumped through. They denied it the first time, and required IVIG, which made me worse and ended up in the hospital with a chemical based meningitis.

I wish you the best on your journey!

Thanks for sharing. I was recently diagnosed with DADS and small fiber neuropathy. All started after I received pf covid vac almost three years ago. My doctor recommends IVIG. You mentioned meningitis. May I ask what was your symptom and how it was treated? I'm very nervous about this as I don't want severe side effects.

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 @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:

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/

Thank you John! I'll look into those resources.

Thank you h37 for sharing your experience and so sorry to hear about your symptoms. I hope the infusion will continue to make things better for you. May I ask if you experience any pain anywhere in your body or is it just numbness and tingling that are confined to the feet and hands? Do you have any other symptoms besides tingling and numbness? As for me, I experience pain/sorenes, tingling and numbness heavily in my hands and feet but also legs, thigh, buttuck and upper body. My muscle feels weak all the time and when I try to do things it takes a lot of effort. Pain gets better with movement but once movement stops pain intensified. Also, I get dizzy easily when standing up and when getting up from sitting or lying down, have stomach bloat, frequent urination and heache all the time. If I try to exert myself, severe pain sets in and take me several days to recuperate. I'm not sure if this is a typical symptoms for DADS.

Thank you and John for sharing the link about DADS!

Hello kle,
I'm so sorry to hear that you are experiencing pain in addition to the other symptoms you describe. That sounds utterly exhausting. I hope you are able to have some productive conversations with your doctor to help provide some context for the symptoms you describe. At this point in my journey, I'm not experiencing pain that is associated with the DADS/Anti-MAG diagnosis. Numbness (feet), ataxia, balance challenges, and paresthesia (arms/torso/legs) are the symptoms I experience and read the most about.
Another resource I found early in my search was a book called Peripheral Neuropathy by Norman Latov (I downloaded it from Apple)...it's from 2007, but it was still helpful for framing up the different manifestations of neuropathy (i.e. motor, sensory, and autonomic), the structure and function of the nerves, etc. When explaining the autonomic nerves, Latov describes the "autonomic nerves that control involuntary functions such as heart rate, blood pressure, sweating, and the bowel and bladder" (26). He also describes the different functions/structures of large and small fiber nerve axons. Small fiber axons "remain unmyelinated" and "transmit signals from pain receptors in the skin [and] form the autonomic fibers that send signals to and from the internal organs" (29).
I'm way out of my depth when it comes to this stuff, and I have no medical background. But this is what I have read. As I understand it, DADS w/ Anti-MAG affects the sensory nervous system and particularly the large fiber (i.e. myelinated) axons.