I was diagnosed with anti-MAG about six years ago. Initially, my symptoms – numbness and pain in my feet – we're not a big deal, but things have progressed to a point where now my balance is gradually worsening, and I have sensory and motor issues in my hands. I've had IVIG and plasma exchange treatments, both with no side effects, but neither offered any improvement. Pain is managed nicely with Lyrica and Cymbalta. I'm scheduled to see my neurologist, and I'm sure Rituxan will be in the discussion. I'm inclined to try it, thinking it's the only thing that seems to offer some potential, but I am cognizant of the side effects, and the risk with Covid out there. I am 72 years old, in general great health, exercise frequently, and think I eat pretty well. All this said, I'm wondering if I'm missing something. Could diet change and/or supplements be worthy of consideration? What else? At some point, it's a matter of accepting and adapting, and just moving on with what I've been dealt. So, I would appreciate others thoughts on: anecdotal stories of rituximab – successes, side effects, risks with Covid, long-term treatment issues, etc.; anybody with experience with specialized diets – 525 protocol, Dr. Terry Wahl diet (I learned of these two diet plans from my participation in the mayo clinic chat group – check it out).

There doesn't seem to be a lot of recent posts to this forum thread. Am I missing something? Thanks a lot.

Hi to all!

I have read some of your comments and questions, concerns about the IgM MAG. I am currently age 68 first diagnosed in 2005 so I have had a long time to experience this condition. It took a long time to get diagnosed but finally a neurologist did at Mass Gen in Boston. It started out with just the tingling, in feet and the arm tremors. Some "ticks" (uncontrolled jerking) but these have gone away. Mass Gen immediately started me on a 24 regimen of Rituximab but this did not work, no relief. Apparently 50% do not. My neurologist at Mass Gen tells me there is nothing more they can do.

I want to tell all that this is a slow acting condition. Sometimes a year or two will go by and I think nothing has happened when it has. I use "benchmark" physical activities like simply climbing stairs in my house and seeing the difference over 6 months. Then again, I believe I have "attacks" of the antibody not realizing this has happened until after the fact and my condition has worsened.

At this point I have had this disease now 17 years. I can still walk, but not run. Tingling in my legs all the time, both and the arms hands just starting. Pain in my feet all the time. I have gotten use to it. The Mass Gen neurologist says my "balancing issues" caused by my feet condition since the sensory response to my brain for balancing is through my feet. Otherwise I am ok, no other medical issues I am aware of except maybe my heart. I have had one heart attack but it maybe unrelated. High BP too under control with meds

I get "out of breath" very easily with simple activities but usually from something new I am doing. I have been tested for heart problems, "stress tests" all normal. But blood tests indicate that it is all muscular with the loss of function. The strength is my legs is almost not there due to atrophy I believe

My suggestion? Keep moving! I currently I go to the gym (planet fitness) twice weekly and workout vigorously. I also play golf weekly (here in Maine when there is no snow on the ground!) which I walk all nine holes. I also take Tae Kwon Do (not an advanced green belt) which is also very vigorous. I think these physical activities are doing a lot! Otherwise I modify my activities where necessary (light on going to bed as the darkness causes me to fall).'

By exercising my legs whenever I can, I keep those muscles that I can still use in good condition as much as possible. Strengthening them at the gym, legs doing a lot. TKD provides a totally different exercise pattern.

I hope this is helpful. Hang in there and do no let it get you down emotionally.

Maine Genie

Hi, I have been diagnosed with IgM MAG autoimmune as well. I live in Maine and it took several years to diagnosed ultimately at Mass Gen H in Boston. I am currently a week shy of my 69th birthday but I was diagnosed, typical with the disease at age 50. Yes, tingling first in feet, then legs, then "ticks" that disappeared. At first my balancing was ok but as you know the progression is very slow even for me to see differences. I use "bench markers" of physical effort to detect changes including just stairs in my house, walking up hills in the neighborhood. Currently my feet and legs well past "tingling", now numb, cold feeling. Since the bottom on the feet are where our balancing comes from, that too is now more significant especially at night without light as with going to bed. I get out of breath easily but only doing different movements since those muscles now no longer work (the nerve fibers going to them not working). I was treated initially with Rituximab infusions but apparently I am one of the 50% it does not help. My neurologist at MGH says nothing more they can do for me. So I exercise at the gym, 2x per week, vigorously with weights and aerobic. I also walk the golf course during the summer playing nine holes weekly and I take Tae Kwon Do classes also 2x week, also vigorous physical effort. All of these things seem to help including my overall health. But I have had two unexplained heart attacks or cardiac arrest in the past ten years. I have never smoked and work out as you see, no weight issues. I have told my cardiologist that the Igm MAG protein could be the reason but no response. Since few medical are familiar with this condition, I get a lot of stares of confusion from the MD. My arms and hands beginning to become affected now but I still work and use the computer but it is hard to sign my name. Yes the progression is slow. I do have "attacks" at times after which I see difference especially more now with my age. But I do not realize it until latter. I hope this is helpful. You will be ok if you take care of yourself. Maine Genie, Steve

Hi. My case is very different from everyone I have seen here. Anti-MAG hit me like a freight train.

In early March 2023, at age 68, my fingers went numb. I asked Google about numb fingers and it came up with “carpel tunnel”. I thought, “what a pain”, but it didn’t sound like an emergency. The next week I noticed extreme exhaustion. I went to bed an hour early each night feeling like I’d just run a marathon, even though I’d only spent the day on my PC. And I had night sweats. I would wake up sopping wet. I thought, “maybe some kind of flu”, and I waited for it to pass. The third week was the shocker. I finally got up from my computer to prune the fruit trees (late as usual). It was bizarre. I felt like I was wearing a 100 lb. lead suit. Every movement was incredibly difficult. I could barely hold my little electric chainsaw. I panicked. My mind went immediately to MS which my sister has. She is now in a wheelchair.

I called my Dr. the first of April. He ran some tests. It took a month to get a Neurology referral from him. The first of May, I talked to the Neurology office. Their first available appointment was not till sometime in July. My heart sank. But a friend told me about GBS. That sounded a lot better than MS, so In the absence of any other information, that is what I focused on.

In May I could still walk, drive, go to the food store etc. But it was getting harder. I would park next to the cart bin, then hold on to the car or bin till I could grab a shopping cart to hold on to. Later in the month, I started having falls. If my foot would unexpectedly catch the edge of a carpet or an uneven sidewalk, I no longer had the reflexes to recover, and I would go down.

By mid-June I could not walk at all without a walker and I felt none to steady with that either. For anything over 100’ I had someone push me in a transport chair. I no longer felt safe coming down the stairs from the bedroom, so I did it on my butt. Later PT got braces for my shoes to steady my leg and they showed me how to do the stairs sideways, one step at a time, facing and holding the rail with both hands. But I only did that for Dr. appointments. So, I’m pretty much confined to my bedroom now. I slide from my bed into my computer chair in time to eat breakfast at my computer desk where I sit till after dinner, when I slide back to my bed. My fingers were so weak and uncoordinated that I could no longer operate a standard nail clipper or open a bag of potato chips. I lost hearing in my right ear. My bowels stopped working – I stopped pooping. I had to take stool softeners twice a day. I had terrible gas pains and felt bloated. My feet were swollen. I bought compression socks but was totally unable to put them on. At night my legs ached from my butt to my feet.

All this time I’d had a pretty good attitude, thinking that GBS/CIDP is treatable and completely reversible. I’d soon be back to hiking, backpacking, and cross-country skiing in the Colorado mountains. (I had some GREAT trips in 2022). This was just a bump in the road and just the chance I’d been looking for to step back and catch up on a mountain of reading and various computer projects.

My attitude abruptly changed in July. I finally met with my neurologist. After a nerve conduction study, a spinal tap, MRI scans, and endless blood tests (at least 24 tubes), by the end of July I finally had a diagnosis – anti-MAG. And the prognosis for that did not look nearly s rosey. My Dr said in 4 and a half years he’d only seen one other case. I asked how that patient did, but did not get a clear answer. I continued to deteriorate.

Mid August – I’m scheduled for my first round of rituximab next week, but after reading the studies I’m not particularly impressed with its effectiveness. My arms and fingers have reached a new level of numbness. I can no longer really type, only hunt and peck. The muscles in my arms and legs are now incredibly tight and hard to stretch. I am now closing out all my open projects as best as I can, looking for others to pass on my volunteer duties to, gathering up all my financial papers and notes for my wife, and I think it is time to register my DNR orders.

Given my rapid progression, I have to wonder what triggered it. I hope it wasn’t my UV exposure. A week before this started, I was setting up my fluorescent mineral display at our rock show. I was using our new 195-watt UV-C lamp. (UV-C is right next to X-ray on the electromagnetic spectrum). A couple of times my hands got so close to the lamp, it felt like they were being cooked from the inside. It was a strange sensation. Of course, my wife blames it all (blames everything) on the Covid vaccine (which she refused to get).

Hello all,

I recently tested positive for ANTI-MAG antibodies. I did not do an ELISA test, but an antibodies in blood test. My result was 46ng/ml with reference range of 0-3, so way way out of range. I am only 43 years old and have been suffering through 10 months of whole body neuropathy thought to be caused by covid.

I do have spasms in my left leg in addition to the loss of sensation on all skin and in my gums too. Could be early symptoms.

I will try to do an ELISA test if one is available, as soon as possible