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Autoimune Autonomic Ganglionopathy?


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I went to my Neurologist a few weeks ago and he did some testing for possible autoimmune causes of the dysautonomia. Previously I thought it could have been Mast Cell related but all of the tests came back normal. He called this morning to tell me one of the tests were positive for an autoimmune disease. I missed his call to talk about specifics but in his message, he said he wanted to do more testing, which included a tilt table test. I went to my patient portal and found a note saying:

"The following antibody was identified: Neuronal AChR, Ganglionic (Alpha 3).* This profile in the proper context, would support neurological autoimmunity." 

I started doing my research and I haven't been able to find much but what I have seen hasn't told me much. Online, it says that Autoimmune Autonomic Ganglionopathy (AAG) should present with HYPOtension but I experience blood pressure fluctuations, especially HYPERtension. I've also never fainted which is also a symptom. I did, however, find an article from the NIH saying some patients may experience POTS-like symptoms but it doesn't say to what extent. First of all, would a tilt table test show anything if I usually remain hypertensive? Could this (AAG) explain most of my dysautonomia symptoms? Any information you could provide would be greatly appreciated. I have a follow up scheduled in a few weeks to see my Neurologist to go over things further.

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@DAB19 - the TTT would give information on the extend that the neurological condition causes orthostatic intolerance, the main symptom of POTS. So - yes, I believe this is a very important step in order to determine what is going on and to evaluate your symptoms. 

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  • 3 weeks later...

Thanks for your replies. I had the TTT completed yesterday and I got the results this morning, to my surprise, I did become hypotensive at 70 degrees tilt after about 26 minutes.  I became diaphoretic, started having chest discomfort, and heart rate elevated (just below tachycardia). I hope this is the beginning of getting answers. I will discuss the results further with my Neurologist at my follow up next month. 

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  • 9 months later...

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