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No longer Alone


dream02
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Hi All,

My name is Denise and I've been doing alot of reading on this site and it's like WOW! I've been struggling with symptoms of POTS for 15 years but was only recently diagnoised a couple of months ago at the University of Birmingham Hospital. Unfortunatly, while they knew what I had they pretty much told me there is no good treatment and that my family doctor could follow me. Because I can't work right now I've moved in with my son just outside Savannah and now I'm looking for a doctor who is knowledgable about this disorder. I refuse to deal with a doctor who doesn't listen to me or tells me it's all in my head...I've had enough of that for a lifetime. Does anyone know of a good doctor to go to in this area? I'll be on TRICARE so also have to find someone who accepts that. I'm really glad to have found this site...it really helps to not feel so isolated!

Denise

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Hi Denise and welcome!!

I'm new to the form as well. I understand your frustration. I too was told that I could follow up with my PCP. My PCP doesn't even ever ask me about it and it's been 3 yrs since I was dx'd!! I'm tired of being tired and I'm going to a local specialist this week who happens to suffer from POTS himself.

I have learned more reading posts on here in the past two weeks than I have searching the internet the past 3 yrs!!! The people on here are amazing!!!

Good luck with your search for a doctor, especaily with Tri-Care. Tri-Care doesn't pay very much so a lot of doctors don't accept it. Not to metion it's a pain to get Tri-care to give you the referrals you need.

Happy New Year & Best Wishes,

Jill

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I know it would be a long drive for you, but the Center for Dysautonomia and Mitral Valve Prolapse in Birmingham, AL is a good place to start. I saw Dr. Sawyer there, she also has dysautonomia and so she can truly empathize with her patients. They do heart ultrasounds, a modified version of the TTT and stress tests at the facilities. Not as sophisticated as Mayo, but they have good physicians and nurses there. I believe its listed on the physicians list link that Michelle posted for you.

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Guest tearose

Welcome Denise! Sorry you had to suffer for 15 years without a dx! I can imagine how poorly you were treated all those years! Well, finally your on the right track and you found us! That is a good turn of events.

You are right to work to find a doctor who will treat you with respect and will "help" you through whatever is before you, a team effort I like to say.

Hope you are comfortable living with your son and that it offers you the opportunity to rest and get stronger.

Best regards, tearose

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