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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: May 26 10:50am | Replies (6004)

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@larrymc

Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that it is extremely rare. He is talking about getting approval for starting IVIg treatments. Has anyone had experience with this type of neuropathy and or the treatment?

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Replies to "Hello I've just been diagnosed with anti-MAG peripheral neuropathy. My Neurologist and internet searches say that..."

Hello @larrymc, Welcome to Mayo Clinic Connect. I'm hoping that there are others with Anti-MAG Peripheral Neuropathy who will be able to share their experience. There is another discussion on IVIG Infusions that you may find helpful.

- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

In case you haven't seen these, the Foundation for Peripheral Neuropathy and the GBS/CIDP Foundation both have information on Anti-MAG Peripheral Neuropathy here:
- Anti-MAG: https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/autoimmune-disease/anti-mag/
- Anti-MAG Peripheral Neuropathy: https://www.gbs-cidp.org/variants/anti-mag/
- Immunotherapy for IgM anti‐myelin‐associated glycoprotein paraprotein‐associated peripheral neuropathies: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6457998/

Are you able to share a little more about your symptoms with your anti-MAG peripheral neuropathy?

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.