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.

ladykatybee | @ladykatybee | Nov 6, 2022
In reply to @jsimmons74 "Hi The diagnostic doctor my son sees, thinks he may have AAG. His bloodwork has been..." + (show)
@jsimmons74

Hi
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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bet | @bet | Dec 19, 2024

My daughter has markers for aag. She was turned down for an appointment at Mayo. Any recommendations for where she can receive treatment?

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silvanaborowski | @silvanaborowski | Mar 23 10:00pm

My husband was diagnosed AAG 3 months ago and they didn’t start any treatment yet because he also has something wrong with his thyroid and they still investigating and trying medicines. His symptoms are severe. He has internal tremors, agonies on his legs and arms, irritability, confusion that make him wanting to kill himself. It’s been the worst time of our family’s life.
We went to several doctors. He is 49,eats healthy, can’t exercise now but before he always did. Everything is so slow. Does anyone knows a treatment that really works?

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1 reply
lkirnbauer | @lkirnbauer | Mar 24 9:34am
In reply to @silvanaborowski "My husband was diagnosed AAG 3 months ago and they didn’t start any treatment yet because..." + (show)
@silvanaborowski

My husband was diagnosed AAG 3 months ago and they didn’t start any treatment yet because he also has something wrong with his thyroid and they still investigating and trying medicines. His symptoms are severe. He has internal tremors, agonies on his legs and arms, irritability, confusion that make him wanting to kill himself. It’s been the worst time of our family’s life.
We went to several doctors. He is 49,eats healthy, can’t exercise now but before he always did. Everything is so slow. Does anyone knows a treatment that really works?

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I have read your post and wanted to share mine. I have Long Covid, no taste or smell since having Covid in December of 2022. I also suffer from Hashimoto’s and Hypothyroidism. Could it be possible that you also have Hypothyroidism? This could explain the internal tremors and your slowed movements and muscle issues. I would actually get severe cramps in my upper thighs that would almost make me pass out. I began taking Synthroid for my thyroid condition after having a blood panel run on my thyroid and those symptoms went away. Over time, my tremors and fatigue lifted. If you have a general doctor who will run a Thyroid Panel, have your TSH, T3-free, T4-free, Antibodies and Thyroglobulin levels run. If you’re hypothyroid, your levels will be high and you’ll need medication to level out. I hope this did some good and I wish you good luck and good health!

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1 reply
silvanaborowski | @silvanaborowski | Mar 24 10:37am
In reply to @lkirnbauer "I have read your post and wanted to share mine. I have Long Covid, no taste..." + (show)
@lkirnbauer

I have read your post and wanted to share mine. I have Long Covid, no taste or smell since having Covid in December of 2022. I also suffer from Hashimoto’s and Hypothyroidism. Could it be possible that you also have Hypothyroidism? This could explain the internal tremors and your slowed movements and muscle issues. I would actually get severe cramps in my upper thighs that would almost make me pass out. I began taking Synthroid for my thyroid condition after having a blood panel run on my thyroid and those symptoms went away. Over time, my tremors and fatigue lifted. If you have a general doctor who will run a Thyroid Panel, have your TSH, T3-free, T4-free, Antibodies and Thyroglobulin levels run. If you’re hypothyroid, your levels will be high and you’ll need medication to level out. I hope this did some good and I wish you good luck and good health!

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Yes he had thyroid tests done. All normal but when he had the ultrasound done the thyroid showed very big and inflamed.
It’s been a 2 years investigation and more than 100 tests done. It’s a job.
Thanks for your help sharing your case. It’s very interesting.

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1 reply
lkirnbauer | @lkirnbauer | Mar 24 2:14pm
In reply to @silvanaborowski "Yes he had thyroid tests done. All normal but when he had the ultrasound done the..." + (show)
@silvanaborowski

Yes he had thyroid tests done. All normal but when he had the ultrasound done the thyroid showed very big and inflamed.
It’s been a 2 years investigation and more than 100 tests done. It’s a job.
Thanks for your help sharing your case. It’s very interesting.

Jump to this post

Since his Thyroid was very big and inflamed I’m assuming he was put on Thyroid medication. If not, find a new doctor. It should not take 2 years to find out if you have a thyroid condition. It sounds to me like he has Hypothyroidism, like me. Find a good Endocrinologist and have them run the same labs. He should not have an inflamed thyroid. That is not normal! He needs medication. Good luck1

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