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Anti Myelin Associated Glycoprotein Antibodies
Neuropathy | Last Active: 11 hours ago | Replies (17)Comment receiving replies
I have been dealing with health issues for 4 years now. Before March 2019, I was a life long athlete, marathons, triathlons and Ironman and within a few months, I could only walk short distances, difficulty with stairs, no balance, weak muscles, no reflexes and the list goes on. I was first diagnosed with Guillan Barre Syndrome followed with 50 IVIG treatments which ended up being the wrong diagnostic. Then 2 years ago I was diagnosed with IGM paraprotein neuropathy, later, Anti Mag Neuropathy and now DADS-M with Anti Mag with MGUS. How rare is that. Three different diagnosis with three different neurologists. I had 4 rounds of Rituximab within a month 2 years ago with no improvement. My Oncologist suggested I try Rituximab every 3 months for one years see what happen. After 3 treatments, still no change but they tell me to be patient as well. Three years of physical therapy helps me with my balance. I wish I could do more exercise but I can't do anything that involves my legs. I do rowing, handcycle, swimming and upper body weights. I feel there is more to it because now I have memory, cognitive and speech issues following a double lung embolism. I have more symptoms but the list is too long. I am 62 years old and feels like 80+.
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@savomic Hello, I’m a retired pathologist who was diagnosed with a MGUS IgM kappa with also an IgG component as well in November, 2024. I trained at Mayo’s for my residency and was diagnosed there as well. I’m also positive for anti-MAG neuropathy. My symptoms are numbness in both feet and lower legs and a little tingling in my palms. I underwent a bone marrow biopsy with flow cytometry that were negative (April, 2025). At that time my Mayo neurologist and hematologist suggested that I get a PET scan (July 2025) to rule out a solitary plasmacytoma. The PET scan lit up 2 areas in my left collarbone so they decided to biopsy the one that had the most uptake. Sadly, they couldn’t get any tissue, not even bone. It was then decided that I return home and get an MRI with and without contrast (August 2025). My heme doc said that sometimes plasmacytomas show up as a darker area on contrast MRI. Both Radiologist’s here in my home town and at Mayo’s thought that the changes in my collarbone were most likely due to degenerative changes and not tumor. I repeated the MRI (February 2026) with the same results.
My neurologist at Mayo’s was one of the investigators studying anti-MAG neuropathy and he showed in his study and reported in a journal article that out of 200 patients with anti-MAG neuropathy that only one improved on Rituxan (probably because she had coexisting CIDP). My hematologist felt that Rituxan can help but that it takes a really long time to get any measured results.
I chose not to take it fearing the side effects it can cause especially PML. As a pathologist, I’d made that diagnosis a number of times over the years and it can be devastating for the patient. There’s really no cure. It frankly scares the h**l out of me. So I’m just biding my time and I’ll repeat my blood levels the first of July when I get back from visiting my wife’s home country of Brazil. Other than that, this rare condition sucks!!!
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So sorry for all your symptoms and loss of physical abilities. When one has been as physically active as you were and still relatively young, can certainly understand your frustration at having to adjust to the neuropathy now. Good luck on this journey and hope the Rituximab helps at some point. My oncologist/hematologist said that if my infusions don't show any improvements over time, perhaps they will at least help keep the neuropathy from getting worse than might otherwise. Probably know way of actually knowing though.