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Anti Myelin Associated Glycoprotein Antibodies
CIDP is a fairly rare disease. Anti Myelin Associated Glycoprotein(MAG) Antibodies falls under the CIDP label but is far rarer, especially in women.
I was diagnosed along with Axonal Polyneuropathy last fall. I had 4 doses of Rituximab(an unproven drug) in November/December. I am looking for others with Anti MAG Antibodies to start a conversation to discuss our experiences, as well as, the progression of this disease.
If you're out there, please reply.
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Thanks John. I stopped the interferon almost 3 years ago and went for 2 months with no meds for my blood disorder. I then started a med called Hydroxurea in April 2021 and have been on it since. The dizziness has remained about the same throughout.
One possible path to relief I think could involve microbiome. I've noticed significant worsening of sensory neuropathy and dizziness when having diarrhea. Then some improvement after it resolves. The docs that are working with me most diagnose me with idiopathic neuropathy but they have no idea why I feel so sick/dizzy. Fermented foods seem to aggravate things too.
After reading all the posts here about dizziness and neuropathy there is some comfort in knowing I am not alone.
Foundation for Peripheral Neuropathy is sponsoring a new home based research study if you have Anti Myelin Associated Glycoprotein Antibodies.
-- Anti-MAG Neuropathy At-Home Research Study
https://sanguinebio.com/condition/anti-mag/
I am a 76 year old female diagnosed with Anti Mag CIDP one year ago. My insurance won't approve Rituximab and I am not sure that the IVIG is working I have had several rounds of those and today everything is sore. I have knee pain, thigh pain, foot issues and am feeling very alone. Has anyone had eye issues with anti mag? How did your neurologist get Rituximab? help!
Stop sending me updates
alone is how I feel alright! thanks for making me feel less so. I have contacted the Facebook page you mentioned
@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!!!