ariella Posted June 15, 2005 Report Share Posted June 15, 2005 HiMy sister needs to investigate the possibility of POTS. She has been having several abnormal ekg's which are puzzling the doc because the heart itself is healthy. (mostly T-waves) She has also had gastro issues for years, also of unknown origin. She is in NYC and covered with GHI.thanksAriella Quote Link to comment Share on other sites More sharing options...
yogini Posted June 15, 2005 Report Share Posted June 15, 2005 Ariella,I think the jury is still out on most of the doctors in the NY area. Here is a link to a recent discussion on the topic. You may also want to check out the lists of doctors on potsplace.com and ndrf.http://dinet.ipbhost.com/index.php?showtop...ive+in+new+yorkFeel free to shoot me an email if you want to talk offline. -Rita Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 15, 2005 Report Share Posted June 15, 2005 Wish I could help you here. I am also in NY and have not found anyone yet who is both compassionate and knowledgable with dysautonomia. I go to the Autonomic center in Ala. 1x a year and keep my fingers crossed the other 11mths of the year.If I hear of anyone I will let you know also. Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted June 15, 2005 Report Share Posted June 15, 2005 Where is the autonomic center in alabama and what type of yearly followup do they give you? I might be missing out on something! Martha Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 15, 2005 Report Share Posted June 15, 2005 It's called the Mitral Valve Prolapse and Autonomic Disorders Center of Ala. It's in Birmingham. About 15 yrs ago I was diagnosed with MVP. I had panic/anxiety, racing heart, low b/p, palpitations, heat/exercise intolerance,,a whole slew of symptoms. I went down there because that is what they dealt with, Mitral Valve Prolapse Syndrome, which the syndrome is dysautonomia. They did a tilt table test, and some other tests plus excercise/breathing test where they check your oxygen levels while doing a stress test. I try to go down 1 a year to go over my meds, symptoms etc. and any testing that needs to be redone. I can call them anytime and they get back to me. It's a far trip but so far I have not found anyone local who even believes in dysautonomia,,I should rephrase that, I have been told by dr's that if I do indeed have it I would be very bad off. It's either black or white with them,,no gray, and that is where I fall.I'm just glad I have a dr somewhere who believes me Quote Link to comment Share on other sites More sharing options...
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