Anti Myelin Associated Glycoprotein Antibodies

Posted by artistwagoodi @artistwagoodi, Mar 1, 2023

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

george1976 | @george1976 | Oct 25, 2023

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.