1. < Autoimmune Diseases

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

amylydia57 | @amylydia57 | Jul 9, 2020
In reply to @johnbishop "Hello @amylydia57, Welcome to Connect. You mentioned that you have a small improvement in your symptoms..." + (show)
@johnbishop

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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Thanks!

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jsimmons74 | @jsimmons74 | Jul 15, 2020
In reply to @amylydia57 "I have done prednisone, rituxan, and cellcept. Small improvement but still not better." + (show)
@amylydia57

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

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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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amylydia57 | @amylydia57 | Jul 15, 2020

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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jsimmons74 | @jsimmons74 | Jul 15, 2020

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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 4, 2022
In reply to @jsimmons74 "Just suspected right now. Have an appt with a dr in the pediatric autonomic center end..." + (show)
@jsimmons74

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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Hello @jsimmons74

It has been a while since you last posted about your son's health issues. Was he seen by a doctor in the pediatric autonomic center? I hope that you have some answers.

How is he feeling?

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1 reply
jsimmons74 | @jsimmons74 | May 8, 2022
In reply to @hopeful33250 "Hello @jsimmons74 It has been a while since you last posted about your son's health issues...." + (show)
@hopeful33250

Hello @jsimmons74

It has been a while since you last posted about your son's health issues. Was he seen by a doctor in the pediatric autonomic center? I hope that you have some answers.

How is he feeling?

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Well it has been an interesting year. He saw a POTS cardiologist, but hated the way the heart meds made him feel. We started him in biofeedback with a functional neurologist 3 times a week for 3 months. He did that during the spring of last year while focusing on exercising and losing weight. He passed his heart stress test and was allowed to leave for the summer to attend Drum Corp which is a very physically intense activity. He almost ended up in the hospital from cramps and dehydration the first week, but once he got his electrolyte intake up and stable he was able to continue with the activity. He made it the whole summer. I think the intense activity along with the biofeedback and functional neurologist helped reset his neuro pathways! he is almost "normal" now. He works out daily and has no leg issues anymore. His heart rate still jumps up, but he has never passed out. He will be doing Drum Corp again this summer. I think the combo of the 3 things really helped him bc he refused to take the medicine and he has no major issues anymore 🙂
Thanks for checking in!
Julene

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2022
In reply to @jsimmons74 "Well it has been an interesting year. He saw a POTS cardiologist, but hated the way..." + (show)
@jsimmons74

Well it has been an interesting year. He saw a POTS cardiologist, but hated the way the heart meds made him feel. We started him in biofeedback with a functional neurologist 3 times a week for 3 months. He did that during the spring of last year while focusing on exercising and losing weight. He passed his heart stress test and was allowed to leave for the summer to attend Drum Corp which is a very physically intense activity. He almost ended up in the hospital from cramps and dehydration the first week, but once he got his electrolyte intake up and stable he was able to continue with the activity. He made it the whole summer. I think the intense activity along with the biofeedback and functional neurologist helped reset his neuro pathways! he is almost "normal" now. He works out daily and has no leg issues anymore. His heart rate still jumps up, but he has never passed out. He will be doing Drum Corp again this summer. I think the combo of the 3 things really helped him bc he refused to take the medicine and he has no major issues anymore 🙂
Thanks for checking in!
Julene

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I appreciate the update, @jsimmons74, I hope that he continues to keep the symptoms under control.

Many heart meds do have uncomfortable side effects. These side effects often dissipate after several days/weeks of use and sometimes a change in meds is necessary in order to find just the right med that helps without causing a lot of discomfort.

How long did your son use the heart meds before stopping them? Did his doctor try different dosages or types of meds?

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jsimmons74 | @jsimmons74 | May 8, 2022

He took the meds for a few months but when he went away for the summer he stopped taking them and none of us knew 🙁
Dr said when he came
Back not to worry about it since he was doing so well.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 14, 2022
In reply to @jsimmons74 "Well it has been an interesting year. He saw a POTS cardiologist, but hated the way..." + (show)
@jsimmons74

Well it has been an interesting year. He saw a POTS cardiologist, but hated the way the heart meds made him feel. We started him in biofeedback with a functional neurologist 3 times a week for 3 months. He did that during the spring of last year while focusing on exercising and losing weight. He passed his heart stress test and was allowed to leave for the summer to attend Drum Corp which is a very physically intense activity. He almost ended up in the hospital from cramps and dehydration the first week, but once he got his electrolyte intake up and stable he was able to continue with the activity. He made it the whole summer. I think the intense activity along with the biofeedback and functional neurologist helped reset his neuro pathways! he is almost "normal" now. He works out daily and has no leg issues anymore. His heart rate still jumps up, but he has never passed out. He will be doing Drum Corp again this summer. I think the combo of the 3 things really helped him bc he refused to take the medicine and he has no major issues anymore 🙂
Thanks for checking in!
Julene

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@jsimmons74, I love the picture of your son. I used to play in a marching band (French horn). He's certainly fit to be carrying an instrument that size and doing all the moves while playing in the heat of summer.

The only issue you'll have now is your heart jumping out of your chest with pride when you watch him. 🙂

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jsimmons74 | @jsimmons74 | May 14, 2022

Colleen that is for sure! He is marching with Phantom Regiment this summer. He has been working his but off at the gym with cardio and strengthening exercises. 45 days til “show day” but I’m
Not counting 😉

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