Is anyone suffering with Anti MAG neuropathy?

@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?

We are hoping within the next few weeks

Hello, I just joined this site. In March of '23, I was diagnosed with idiopathic peripheral neuropathy, then, it was changed to CIDP, and then, a couple months ago to anti-MAG. So, yes, I am a member of this exclusive club (approximately 1 verifiable case out of every 100K people, or a little over 3K in the U.S.). Let me know if I can provide any data or feedback based on my own experience. I am extremely pro-active in taking this head on. Best regards, Steve.

Welcome Steve @laporta, Thanks for joining the Connect community and sharing your experience. I'm one of the fortunate ones with only numbness and a little tingling with my idiopathic small fiber peripheral neuropathy. It really helps to learn as much as we can about our conditions and what treatments are available that might provide some relief so it's great to hear you are pro-active and diving into the mix. In case you haven't tried the search function on Connect it's really pretty good at locating others with similar symptoms and conditions. Here's what search shows for "anti mag" - https://connect.mayoclinic.org/search/discussions/?search=anti%20mag.

In case you haven't already seen the Foundation for Peripheral Neuropathy site, it's a great source of information - https://www.foundationforpn.org/. They also have a lot of their webinars stored on their YouTube channel including some with anti MAG information - https://www.youtube.com/@foundationforperipheralneu4122/search?query=anti%20mag.

Have you found any helpful resources?

Hello John,

Thanks for the kind welcome to the group. It's much appreciated. It's nice to have an outlet, since this is not a topic that I share much with other people. Most people in my life don't know I have it. Yes, I am aware of the Foundation for Peripheral Neuropathy, thanks to my Kaiser neurologist. Very good site: I would also recommend the following: Shining through CIDP, the GBS/CIDP Foundation, the National Institute of Health (NIH) as well as other sites with data on PN, CIDP, and anti-MAG. Speaking of podcasts, my neurologist turned me on to this podcast/video by Dr. Richard Lewis. I guess I'm not allowed to post the link on here as a new member. Anyway, there are many others, most of which I haven't had the time to view yet. A little more about myself, I am a musician (drummer/percussionist), gardener/landscaper, athlete, and live a vegan/plant-based lifestyle. Have a good weekend everyone. -- Steve

Hi Steve @laporta, I thought I would share the podcast /video link for you since new members are prevented from sharing links for a short period of time to prevent advertisers and spammers from using our Connect community. Actually I think I have shared this one before but it is good - FPN Webinar: Anti MAG Peripheral Neuropathy: An Overview with Dr Richard Lewis, MD:

Good morning. Yes, this is the one. Thanks John.

Best Regards,

Steve

P.s. You may already be aware of them, but for those who use social media, there are quite a few groups on Facebook that focus on peripheral neuropathy, including one called Support Group for Peripheral Neuropathy. It has more than 30K members. I just joined it and a few others.

Best,

Steve