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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