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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@betoma

larrymc - I just joined this group, and yours was the first post I saw. I was diagnosed with anti-MAG several years ago. Beginning this July, I started a IVIg treatments. I had about 10–12 infusions, and met with my neurologist on Monday for testing to determine if there has been any improvement or change. The conclusion is - no, there has been no improvement, and therefore, I've discontinued this treatment. I would add that there were no side effects, so the procedure was quite benign for me. I'm glad I tried it, now I know that it's not an option. Next on the list of possible treatments is plasma exchange, or plasmapheresis. I'm still exploring this option, and will be investigating whether my insurance company will cover the cost. All of these choices, including immuno suppressant options, need to be continued for years and years, if they prove helpful. At least that's my understanding.

Does anyone have any experience with plasmapheresis? It's a bit more invasive than IVIg, as a catheter is required. Any comments on this topic? Thanks.

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Replies to "larrymc - I just joined this group, and yours was the first post I saw. I..."

Hello @betoma, Welcome to Connect. I'm not sure @larrymc saw your reply to his post. He did share an update in another discussion here - https://connect.mayoclinic.org/comment/608152/. There is another discussion started by @rwinney on plasmapheresis you might find helpful -- Plasmapheresis - anyone had success?: https://connect.mayoclinic.org/discussion/plasmapherisis-anyone-had-success/

There is also a YouTube video from Apr 6, 2010 by Brian Weinshenker, M.D., a Mayo Clinic neurologist, describes the process of plasma exchange in treatment.


Are you able to share a little more about your symptoms and anything you have found helps a little?