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Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy

Autoimmune Diseases | Last Active: Dec 19, 2024 | Replies (22)
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@amylydia57

I have done prednisone, rituxan, and cellcept. Small improvement but still not better.

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Replies to "I have done prednisone, rituxan, and cellcept. Small improvement but still not better."
John, Volunteer Mentor | @johnbishop | Jul 4, 2020

Hello @amylydia57, Welcome to Connect. You mentioned that you have a small improvement in your symptoms from the medications you are taking. While we wait for other members to respond, are you able to share a little more about the symptom that bothers you the most?

The Genetic and Rare Diseases Information Center has some good information and resources listed on their website here for Autoimmune autonomic ganglionopathy - https://rarediseases.info.nih.gov/diseases/11917/autoimmune-autonomic-ganglionopathy

I also ran across an article that you find interesting. A novel treatment for autoimmune autonomic ganglionopathy?: https://n.neurology.org/content/94/15_Supplement/4706

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jsimmons74 | @jsimmons74 | Jul 15, 2020

Hi @amylydia57 Sorry just now catching up on emails. Would be interested to hear about your symptoms we have finally been to the autonomic center for tests. Have to wait til end of months to see the dr to get results and talk about treatment. My son has issues standing still. I know band camp this week will be tough for him.
Julene

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