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Question On Autoimmune Autonomic Gangliopathy


sue1234
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I think that was what they discovered with him ----if I'm not mistaken. He went on mestinon and they did feel his was autoimmune. He knew he had AS. But, the last time I talked to him - the mestinon was helping him. He hasn't been here in awhile and I haven't talked to him in awhile ----so guessing he must be better. At least that's what I hope has happened for him and others when we don't see people here for awhile.

Issie

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Hyper, that's kind of what I found when looking around on AAG. But, when they list the possible symptoms one might find from AAG, orthostatic hypotension was the ONLY symptom I did not have. When they mention a lack of sweating due to the antibodies attacking the acetylcholine receptors(or nicotinic receptors?), I was thinking that could explain why I absolutely quit sweating with my POTS. The other thing is the intolerance to bright light due to the same factors that control the pupil's reaction, along with saliva and tear flow. Also the slow gi system due to the same factors. All these have happened to me EXCEPT the hypotension.

So, I am afraid they will discount all the other things that do fit as mentioned above, and just say that one has to have hypo or they wouldn't have AAG. I am hoping getting tested for it will not be based on these grounds.

They have a multi-center clinical trial for AAG, but they only accept patients with ortho. hypotension. How skewed is that?? I would really like to know how many here that HAVE been positive for AAG have hypo or hypertension?

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I have hypotension, but I didn't start out that way. Initially, my blood pressure went up along with my heart rate when I stood. As far as I can tell, the degree of orthstatic hypotension in AAG corresponds to the severity of the disease/autoantibody level. There was some trial I read about that only wanted people with drops of 30mmHg or more, whereas mine is just 10-15mmHg.

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Sue, I called my Mayo doc and asked if I was tested for AChR antibodies. They said I was and was negative. I do have high bp and am Hyper. But, have tested positive for other antibodies. Just trying to figure out what it all means and not ready to share about or talk about it much yet. Have to understand the meanings first.

Issie

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Issie and Rich, let us know when you all have info to share. I had my whatever acetylcholine antibody checked when my pulmonologist wanted to make sure I did not have myasthenia gravis due to what seems a weak diaphragm. That was negative, but I think the AAG test is different. In fact, I'm hoping just to get the whole autoimmune dysautonomia panel done, rule it all out or in. Get it overwith and done.

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The principle of denervation hypersentivity could support a hyperadrenergic presentation in autoimmune or neuropathic basis. Whether that equates to AAG I am not sure but I guess Dr Sandori would know, although I know of a patient given IVIG with postural hypertension who responded.

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I liked that the article showed at the end that there may be other autoantibodies that are yet to be discovered that could be causing some of the issues. I think maybe if autoimmune issues were looked at closer - we might find some more answers.

Issie

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I had the Mayo panel done for auto antibodies and was negative. POTS neuro there still thinks I have an auto immune form but just not one of the forms they've identified so far. I do have hypotension though- at least on TTT. In real life my BPs are all over the map. Seems to vary more by time of day than anything else.

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