Rare disease: Anyone diagnosed with Myelin Associated Glycoprotein?

Hi @mary95, you might be interested in this related discussion started by @artistwagoodi.
- Anti Myelin Associated Glycoprotein Antibodies: https://connect.mayoclinic.org/discussion/anti-myelin-associated-glycoprotein-antibodies/

Mary, I look forward to learning more about your condition and its relation to myelin-associated glycoprotein. Can you share more?

About 18 months ago I started catching my left foot when walking. It seemed to be dragging. My dermatologist gave me the name of a neurologist and I got a referral to see her. She did a few tests: blood, nerve tests with a pin, and others. She said nothing showed up. After another very bad fall, a Dr. at my clinic(not my pcp)suggested a nerve conducting test to my pcp and she ordered it. Now my neurologist is not part of the hospital group so the appt was with a different doctor(not a neurologist). He said the test showed neuropathy. When my neurologist saw his diagnosis, she called me and said she didn't agree with him and wanted to do the test again in addition to sending bloodwork to the Mayo clinic. Halfway through the test she was pretty sure it was MAGS but waited for Mayo to confirm it. I have been told she is probably the only Dr who would catch this since it's so rare. I have been getting Rituximab infusions every 12 weeks. My balance has deteriorated and I am now dealing with severe diarrhea since August 5th. I have a bowel resection in June for diverticulitis and nothing has worked to stop the diarrhea. I have lost about 13 pounds which is a lot for me( weigh 117and 5'2"). My life has been pretty ugly the last year!