Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy

Posted by fmgeorge @fmgeorge, Feb 22, 2020

If you have the above diagnosis, please reach out to me. I just want to chat with others who experience some of my same symptoms and learn what works for you. Also, if you’ve done the Corticosteroid infusions and Rituxab treatment, I want to know your outcome, as I am considering the treatment.

Thanks! Sending much love and light to all.

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The diagnostic doctor my son sees, thinks he may have AAG. His bloodwork has been sent off for a genetic panel and they said 4+ weeks for results. My son is 15. When he stands his legs turn purple or red and it is very painful. His hands and feet sweat profusely. He has seen 5 drs and ruled out several things. I have tried joining a few groups on FB about Ganglionopathy but they won’t approve my request, I assume bc he hasn’t been diagnosed yet. It is almost impossible to find much online that isn’t all medical journal articles. I too am looking for somewhere to ask about symptoms and how people have handled them. Let me know if you find out a place to get answers.

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My daughter is 17 and I believe she has AAG. Autonomic specialist thinks it is autoimmune. She has urine retention, OH, upper abdominal pain and gastro issues, no sweating, eye issues. Did your blood tests come back positive? Trying to work to get her plasmapheresis or IVIG. Have you moved forward with any treatments?

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