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.

Hi. I have been dealing with this at mayo clinic for 10 years. I think I have the record for most amount of autonomic sweat tests taking although that was a few years ago. lol Not an award I wanted to win!! Sorry to hear about your son having issues. So young. Post your questions here or message me directly. Does he have an official diagnosis of AAG or just suspsected? I was also in band camp and can't imagine having this disease so young.

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Just suspected right now. Have an appt with a dr in the pediatric autonomic center end of this month. Hoping for answers. Will keep you guys up to speed. I hate being the one to ask for tests to keep this going. So frustrating to have to work so hard to figure out what’s wrong.

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