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Is anyone suffering with Anti MAG neuropathy?

Autoimmune Diseases | Last Active: Apr 7 7:47pm | Replies (43)
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Thanks to all very much for sharing. I’ve had numb feet ( moderate) for 8 yrs. Most recently not so moderate and going up shins. Had albumin in cns 8 yrs ago and thought maybe sensory CIDP. Now blood work shows anti-mag. Calf’s starting to bother me and tingleys starting to go wild. Finding it difficult to get into a neurologist with anti-mag experience. From all that I’ve read doesn’t appear to be a good treatment. Has anyone found anything that works?

Frank

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Replies to "Thanks to all very much for sharing. I’ve had numb feet ( moderate) for 8 yrs...."
quilterfingers | @quilterfingers | Apr 7 9:42am

@fsr what is anti-mag??????

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mamacwb | @mamacwb | Apr 7 11:20am

@fsr Good morning Frank
I also have anti mag and see a neurologist who has had a little experience with it. A friend who is a neurologist recommended that I see a neuromuscular specialist but I have not yet. Because we are so rare, there isn't a lot known or studied about the disease. There is an international study occurring at multiple locations in the US and abroad. It is called Imagine https://www.foundationforpn.org/imagine-study/
and is through the Foundation for Peripheral Neuropathy. Hopefully we can find relief sooner rather than later. Hang in there you are not alone
Carol

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