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Stem cells for Autoimmune Diseases

Autoimmune Diseases | Last Active: Jul 25, 2022 | Replies (25)
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@molly48823

I don’t know anything about CNS but have found great help with my MPA vasculitis with a Facebook support group which includes patients, parents, and spouses. There are several for CNS vasculitis so you might check out all and see which is best for you. Also, check http://www.VasculitisFoundation.org for information and resources. I can be reached by sending me a private message if I can be of further assistance. Molly

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Replies to "I don’t know anything about CNS but have found great help with my MPA vasculitis with..."
John, Volunteer Mentor | @johnbishop | Mar 1, 2021

Hi Molly @molly48823 - I removed your email address to protect your privacy and keep you from having it added to spam email lists harvested from public forums like Connect. Members can easily share contact information securely by using the private message function on Connect. The Get Started on Connect guide has step by step instructions on using Connect and can be opened from any page on Connect. Just click the Get Started on Connect link in the bottom left footer column of any page. I've included the link for how to send a private message here: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

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leezer | @leezer | Mar 1, 2021

Thank you!! Hope you have a great week!

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leezer | @leezer | Mar 2, 2021

Molly,
Thanks for your reply and the links for more information. My daughter lives in Arkansas, and was diagnosed 5 years ago with Membranous Nephropathy, catastrophic anti phosphoid lipid syndrome and the CNS Vasculitis. All occurring simultaneously in a never sick 15 year old. We did contact the Vasculitis foundation this past summer and got assistance with a neurology appointment in Tennessee quicker than we could in Arkansas. It seems that there is so little known about this type of Vasculitis we aren’t able to find resolutions to help with the daily headaches, CRPS. We have done IV Cytoxan, oral imuran, acupuncture, chiropractic, RFA nerve blocks, and yet she still struggles daily to have a somewhat normal life.

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