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Is anyone suffering with Anti MAG neuropathy?

Posted by framboise1 @framboise1, Aug 24 2:13pm

My husband was diagnosed 1/2 years ago and the disease is progressing. He was taking Gabapentin and has just started lyrica. In addition he will be starting IVIG treatments.
We would benefit from anyone s experience.

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framboise1 | @framboise1 | Dec 19 7:21am
In reply to @colleenyoung "@framboise1, I'm tagging a few others who have experience with anti-MAG neuropathy like @jeffls @lloucass @savomic..." + (show)
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@framboise1, I'm tagging a few others who have experience with anti-MAG neuropathy like @jeffls @lloucass @savomic @con3 @as143 @robertstri @h37 and more. In the meantime, here a couple of related discussions:

- Anyone with Anti-Mag tried Rituximab treatment https://connect.mayoclinic.org/discussion/anyone-with-anti-mag-tried-rituximab-treatment/
- DADS-M Neuropathy with Anti-Mag Antibodies...anybody else? https://connect.mayoclinic.org/discussion/dads-m-neuropathy-with-anti-mag-antibodies-anybody-else/

Framboise, when will your husband start IVIG treatment?

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@colleenyoung he started in in August and is happy with his improvement

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John, Volunteer Mentor | @johnbishop | Dec 19 8:13am
In reply to @pammy1 "I also have anti-mag.How is your husband doing now?Is gab,lyrica and ivig helping? I was dxd..." + (show)
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I also have anti-mag.How is your husband doing now?Is gab,lyrica and ivig helping?
I was dxd in spring 2025 and have at least 2 other neuropathies.So far,they are testing for other things and waiting and seeing,no meds.

Does diet,exercise or anything else help?What helps?

How long has he has symptoms prior to dx?

I think mine started decades ago and have been told anti-mag progesses slowly.

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Hello @pammy1, I would like to add my welcome to Connect along with @framboise1 and others. I thought you might find this webinar from the Foundation for Peripheral Neuropathy helpful for learning more about the condition.
-- FPN Webinar: Anti MAG Peripheral Neuropathy: An Overview with Dr Richard Lewis, MD: https://www.youtube.com/watch

Do you mind sharing what symptoms you are having?

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wcooke | @wcooke | 6 days ago

I was diagnosed with anti mag in 1991. No treatment for the disease worked. I have been on gabapentin and tramadol for pain for many years. Good luck.

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