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Does anyone live in Florida?


ethansmom
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I am having trouble finding a support group or a good doctor in Florida. I'v ebeen referrred to a support group but the website is dead and I can't get in touch weith the leaders by e-mail (I checked out http://forums.delphiforums.com/supportnow1/start).

And as for doctors, I can't go to Mayo Clinic because I still owe them soooo much money from two years ago, and there is a doc in Pompano that I've been guarded against by several other patients. Any ideas? I checked out the NDRF and DINET physician lists, but all the docs are sooooo far from where I live (the Tampa area).

Hmmm.....any ideas?

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Ethansmom:

My husband is the one that has POTS and we live in Central Florida.

Finding good doctors with knowledge of POTS has been difficult for us as well. My husband was finally diagnosed last year by a physician at the Cleveland Clinic.

They have 2 locations here in Florida. One in Naples, which is south of your location and the other near Miami. That's the one that I took my husband to. We were finally diagnosed by one of their doctors, but long term care from their facility wasn't a real option for us. My husband has a lot of cardiac involvement like many of POTS patients do and I needed to find someone closer than 4 1/2 hours away. However, not knowing the kind of care you require check out their web site:

Cleveland Clinic Florida

We have a doctor here locally who is seeing my husband. He's not a specialist in the field of POTS, but there are few who are. He is willing to learn and try to help & is encouraging us to seek specialized care for the purpose of gaining a greater understanding. We are now investigating Vanderbilt Univerity Autonomic Dysfunction Center in Tenn.

Hope this helps some. Welcome to Florida. :)

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I'm not "in" FL...but live right on the line..close to P-cola. There is a doc. there..I'm new to this and just started seeing him. I know this is too far for you to go but, if you like I'll ask if he knows of anyone close to your area. :) If you ever want to "chat" I'd be happy to give you my e-mail address so that we could get in touch. I've just turned 28 and am living with my mom! This all hit about a year ago and I'm hoping my doc can give me some kind of tx plan that will help!

Welcome to FL! B)

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Thanks for the responses! I wrote you both an e-mail to see if we can get further with this...I really appreciate your help as this has been a struggle for me. ;)

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I live in central Fl between Daytona and Orlando. I have a wonderful nuerologist that has help me. He has done more for me than Shands or Mayo and I can see him or talk almost dailey to his nurses. My PC is wonderful I can call him day or night and he is always there to help me. I dont know where you live if this is even close .

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YES I would definitely be interested to know who this is...I live in Tampa which is about 2 hours from Orlando. Is this just a GP or do you have both a GP and a specialist? Where exactly are they located?

Thanks for the input!!

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Hey,

Yeah Ralph had to shut down his forum but I don't think he would mind if I gave you his e-mail so e-mail me and I will give it to you. I live in Titusville which is on the east coast of Central Florida. I do not have a POTS doc but my primary is willing to help adn I see a great Chinese doctor. E-mail if you would like

Welcom to Florida!

Stacey :-)

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Stacey, do you know Janine's email as well? I met via email Ralph and Janine when I lived in FL. Janine told me that she had a good doctor in Tampa/Clearwater I think it was. I have lost her email address but she may be a good resource for Jessica as well.

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Jessica,

info

Try this site:

http://dbapps.ama-assn.org/aps/amahg.htm

This is the AMA's doctor dinder, and although it is time-consuming, you will get some background info on all the possible docs in your area. You can maybe start by searching under cardiology or neurology and see what they have listed as their personal interests or specialties.

Good luck,

Amy

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Thanks for the info guys...you all ahve been really helpful. My biggest problem now is WHICH doctor to choose lol :wub:

Ernestine- how far is Pensacola from Tampa? That's where I'm at....thanks!!!

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