sue1234 Posted June 30, 2012 Report Share Posted June 30, 2012 Just wondering, does it only cause orthostatic hypotension? Or, can it be found in orthostatic hypertension as well? Quote Link to comment Share on other sites More sharing options...
issie Posted June 30, 2012 Report Share Posted June 30, 2012 Rama has high bp's. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 30, 2012 Author Report Share Posted June 30, 2012 Issie, Rama has AAG?? I can't remember all those things! Quote Link to comment Share on other sites More sharing options...
issie Posted July 1, 2012 Report Share Posted July 1, 2012 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 Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 1, 2012 Author Report Share Posted July 1, 2012 Thanks! Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 1, 2012 Report Share Posted July 1, 2012 According to Dr Sandroni at Mayo, AAG does not cause hyperPOTS, it causes orthostatic hypotension. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 1, 2012 Author Report Share Posted July 1, 2012 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? Quote Link to comment Share on other sites More sharing options...
sugartwin Posted July 1, 2012 Report Share Posted July 1, 2012 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. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 1, 2012 Author Report Share Posted July 1, 2012 Sugartwin, I am wishing they would just test for it even though we don't fulfill the EXACT numbers or ALL symptoms. I'm afraid they might be missing some that may be like you where, over the years, things change. Quote Link to comment Share on other sites More sharing options...
issie Posted July 1, 2012 Report Share Posted July 1, 2012 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 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 2, 2012 Report Share Posted July 2, 2012 I get my test results back in a week I'll try to post the results.. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 2, 2012 Author Report Share Posted July 2, 2012 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. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 2, 2012 Report Share Posted July 2, 2012 This article says this antibody can be associated with several different conditions - POTS being one (which wouldn't require orthostatic hypo or hypertension):http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/ Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 3, 2012 Report Share Posted July 3, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted July 7, 2012 Report Share Posted July 7, 2012 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 Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 8, 2012 Report Share Posted July 8, 2012 got my results back and i dont have it.. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 8, 2012 Report Share Posted July 8, 2012 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. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2012 Report Share Posted July 8, 2012 few test positive and the titer levels suggested are very low - its almost a questionable diagnosis for POTS. Quote Link to comment Share on other sites More sharing options...
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