Looking for People Diagnosed w/Autoimmune Autonomic Ganglionopathy

Posted by fmgeorge @fmgeorge, Feb 22 11:15am

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 don’t have the same Autoimmune disease as you, but I have Lupus and Rheumatoid Autoimmune Disease. I have been having the Rituxin infusion for about five years. My Lupus is now in remission and my inflammation numbers are down. The thing about Rituxan is It is cumulative meaning it does not necessarily work after the first infusion. You get the infusions every 6 months. It took a couple of years before I really felt the difference in my body. Now when I get the infusion I can feel the positive effects within a couple of weeks. It is as though a vail is lifted off of me. It brings me quality of life.
I hope it works for you. 💓

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@fmgeorge I also have a different autoimmune disease and I use prednisone and rituxan. I get the infusion twice a year and am working at getting off of steroids. You mentioned corticosteroid infusion—-was this done once or will it be an on-going treatment? I had it at the very beginning of my illness, but have been on oral steroids since. I’m doing pretty well now, thanks to rituxan!

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@fmgeorge Can you tell us a little more about the symptoms you are experiencing?

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I'm wondering if @marthalicia0912 may be able to share treatments she has tried for her dorsal root ganglionopathy.

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@janett18

Hi,
I don’t have the same Autoimmune disease as you, but I have Lupus and Rheumatoid Autoimmune Disease. I have been having the Rituxin infusion for about five years. My Lupus is now in remission and my inflammation numbers are down. The thing about Rituxan is It is cumulative meaning it does not necessarily work after the first infusion. You get the infusions every 6 months. It took a couple of years before I really felt the difference in my body. Now when I get the infusion I can feel the positive effects within a couple of weeks. It is as though a vail is lifted off of me. It brings me quality of life.
I hope it works for you. 💓

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Thank you! I am glad that you are feeling well.

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@fmgeorge

Thank you! I am glad that you are feeling well.

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Here I am. ganglionopathy. Also have rheumatoid and psoriatic arthritis, hypothyroidism and about fourteen other diagnosed ailments. (AUTOIMMUNE DISEASES) So, I am not alone ion this planet. Am still looking for a knowledgeable doctor. If you have suffered with these ailments for a long time I am sure you have researched and have come to some conclusions yourself. I think the doctors of today have not attended a school of learning that teaches in depth as used to be many years ago. To me it appears that seeing as many patients a day to make the money is the way things are run today. All this at our expense and pain. Let me know of a space ship that can travel to another planet where patients are treated properly and I will be first in line. I send you this note with great respect and hope you will respond. With sincere care for you, Peach.

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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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I have AAG. Let’s connect!

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

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@amylydia57

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

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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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@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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@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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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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