need doc in NY

[ariella]

Hi

My 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.

thanks

Ariella

[yogini]

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+york

Feel free to shoot me an email if you want to talk offline.

-Rita

[mom4cem]

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.

[Jersey Girl]

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

[mom4cem]

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