venablue Posted July 24, 2006 Report Share Posted July 24, 2006 Hi everyone,I am new to the forum and newly (kind of) diagnosed with POTS. Although tt has been mentioned, no one has said definitively that POTS is what I have. I am trying to find a doctor in the Tampa/St Petersburg area that can help me. Does anyone have a suggestion? Thanks for any help that you can provide. Kristy Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 24, 2006 Report Share Posted July 24, 2006 Kristy,I live in Naples and although I don't have an autonomic specialist I do have a cardiologist that has heard of POTS and has taken the time to educate himself. I know there is a member of DINET from Tampa but I'm not sure if she posts. Maybe she will see this and be able to give you a suggestion. I can't really recommend anyone that wouldn't require you to travel. What kind of doctor are you seeing now? Do they suspect POTS? Perhaps they can refer you to a cardio or neuro that has heard of it and can perform the TTT. With all the hospitals in the Tampa/St. Pete area there has got to be someone! Good luck to you.Alexia Quote Link to comment Share on other sites More sharing options...
venablue Posted July 24, 2006 Author Report Share Posted July 24, 2006 Thank you, Alexia. I was seeing an endocrinologist and an electrophysiology cardiologist, but I am not sure if I will continue with either of them. The cardio is the one that mentioned POTS and perscribed Florinef and beta blockers, but he doesn't seem particularly interested in how I am actually doing. I'm not sure how knowledgable he is....I am trying to educate myself as much as possible. I sincerely appreciate the response. Take care.Kristy Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 24, 2006 Report Share Posted July 24, 2006 Did he perform a TTT? You might want to ask for a referral to a neuro who has an understanding of POTS and maybe a regular cardio. If your EP cardio even knows what POTS is that is a start so maybe he can at least point you in the right direction if he isn't going to manage your care. Quote Link to comment Share on other sites More sharing options...
baja170 Posted July 24, 2006 Report Share Posted July 24, 2006 Kristy:Hello! I am another "newbie" from FL!!I live in Ft. Myers and am sort of "in the same boat". I have not had a TTT yet, but a local cardiologist thinks it's a strong possibity that I have POTS. I have other complex medical issues which makes matters much worse, and have been recommended to go to Mayo-Rochester. I am currently trying to get an appt., but it's been a very frustrating process. I'm hoping once they do the work up and diagnosis, maybe I can follow up at Mayo-Jacksonville. Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 24, 2006 Report Share Posted July 24, 2006 Karen,Hello to another Floridian! Who do you see in Ft. Myers? I see Dr. Talano, a cardiologist in Naples who has a good understanding of POTS and has been working with me. I would highly recommend going to Mayo-Rochester. That is where I received my diagnosis. I also have some other medical issues that Mayo-Rochester was able to address as well. Going there was one of the best decisions I made. Alexia Quote Link to comment Share on other sites More sharing options...
baja170 Posted July 24, 2006 Report Share Posted July 24, 2006 Alexia:My Cardiologist in Ft. Myers/Bonita is Dr. Corbellini and I also see an Endocrinologist in Naples, Dr. Brodie.I appreciate the encouraging words to hang in there with Mayo. Sometimes after a while you start to wonder if you're doing the right thing. Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 24, 2006 Report Share Posted July 24, 2006 Karen,I haven't heard of Dr. Corbellini. I saw Dr. Miles in Ft.Myers before he retired and relocated. What do you think of Dr. Brodie? I saw him for a bit but felt he had too many patients and never knew who I was or why I was there. I see Dr. Sunil, an endocronologist in Bonita Springs. I consider him a lifesaver. He tackled my thyroid problems and he is from Mayo-Rochester and got me an appointment there within a week when no one could figure out what was going on with my heart! So if you are ever looking for a new endo, I highly recommend Dr. Sunil and he fully understands POTS. He even found me my cardiologist in Naples, Dr. Talano. Did your cardio refer you to Mayo-Rochester? Or are you trying to get in on your own?Hang in there! I really feel that Mayo-Rochester is worth it, especially if you have other medical problems you would like to have addressed.Alexia Quote Link to comment Share on other sites More sharing options...
wareagle Posted July 25, 2006 Report Share Posted July 25, 2006 If you're in for a bit of a drive..my doc. in P-cola is really good..he specializes in dysautonomia.You can find his info. on the physician's list...I hope you find someone soon..sounds like Alexia has some good referrals! Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 25, 2006 Report Share Posted July 25, 2006 I'm assuming you are referring to Dr. Thompson in Pensacola. I haven't seen him but I've heard really good things about him from others that have seen him. He even has POTS or some form of dysautonomia so he definitely knows what we all go through. If you're up for the the drive, it will probably be worth it to see him. If I remember correctly you will need a referral from your doc to get an appointment. Quote Link to comment Share on other sites More sharing options...
Cheryl Posted July 25, 2006 Report Share Posted July 25, 2006 I see Dr Thompson too. He's definately worth the drive from Mobile. Quote Link to comment Share on other sites More sharing options...
baja170 Posted July 25, 2006 Report Share Posted July 25, 2006 Alexia & Cheryl:THANKS for the great info on the doctors in the area. I will definitely keep Dr. Thompson in mind if things don't pan out like I'd like getting into Mayo. Dr. Sunil and Talano sound like they might be really good for me as well. I know what you mean about Dr. Brodie; I do like him, but he is a very busy guy. I usually end up seeing his PA, which is OK for the most part, but when I'm having trouble with my meds and have to get a ride down to Naples, (I cannot drive due to a loss in vision), it would be nice to actually see a doctor. I would be very interested to know more about Dr. Sunil and if he has treated other patients with panhypopituitarsm (which is part of my other medical problems, and of course, is also very rare and hard to treat).It's so nice to know you guys are out there. Thanks for your input; I will keep you posted. Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 25, 2006 Report Share Posted July 25, 2006 Karen,I'm going to send you a PM with contact information on Dr. Sunil and Dr. Talano. They are good friends which makes it even better because they consult on my health care. Dr. Sunil is a very patient man and you always see him. The only time he didn't know what to do with me he got me an appointment at Mayo-Rochester a week later and then handled my follow up care. Like I said, he is from Mayo-Rochester so he is very knowledgable. Dr. Talano will spend as long as necessary with you which sometimes results in a long wait in the waiting room but it is worth it because he takes his time with you. Another plus is that he is ALWAYS available by cell phone to you. I haven't had to call him yet but it is comforting to know he is available if I need him. I'm not sure if he still does this, but he used to see patients on Thursday in Bonita Springs at Dr. Sunil's office. Do you see a neuro? I can only recommend who NOT to see in southwest Florida at this point. I'm searching for a good one who understands POTS. Alexia Quote Link to comment Share on other sites More sharing options...
baja170 Posted July 26, 2006 Report Share Posted July 26, 2006 Alexia:Can I ask who you see as your Primary Care Physician? I used to see Dr. Debra McCormack in Bonita, but she recently moved to Alabama. I am currently seeing an Internist that is close to me, but I'm not sure if I like him or not....I really need a good primary doc.Thanks for sharing!!Karen Quote Link to comment Share on other sites More sharing options...
worththewords Posted July 26, 2006 Report Share Posted July 26, 2006 Karen,Did you get my PM with the contact info for the other doctors? I typically just see my specialists...endocronologist, cardiologist, and allergist/immunologist. I haven't really had the need for a PCP. I've heard that Dr. Mark Goldstein is really good internist. He shares an office with Dr. Sunil in Bonita Springs. He was the director of internal medicine at the Cleveland Clinic but left to have his own private practice because he didn't agree with Cleveland Clinic's policy of only spending 15 minutes per patient. That's the same reason Dr. Sunil left and Dr. Talano as well, who was the head of cardiology there. Hope that helps.Alexia Quote Link to comment Share on other sites More sharing options...
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