Jennij Posted June 8, 2012 Report Share Posted June 8, 2012 I know this is a really broad question but I have an appointment with my primary care doc coming up and she's basically willing to write me a referral for a POTS specialist anywhere (need her ref. for insurance) . Problem is, I don't know where! I have been scouring the forum trying to find a general consensus of some names/leading clinics. I know about Mayo but now see so-so opinions.....anyone have any suggestions. I'm on the east coast but can get to the mid-west by car I suppose. Hope this isn't to general a question. I know there is the list on the Dinet site but I kinda wanted people's opinions/ personal experiences. Thanks. Quote Link to comment Share on other sites More sharing options...
puppylove Posted June 8, 2012 Report Share Posted June 8, 2012 Dr. Abdallah in Reston VA is a very compassionate POTS specialist. He is technically a pediatric cardio but I'm pretty sure he will see anyone. We have had some issues with the way the office is run, but the positives out weigh the negatives. Just to let you know he does not accept care first anymore. When I leave appointments with him I always leave feeling hopeful, not depressed like I did with previous doctors. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted June 8, 2012 Report Share Posted June 8, 2012 Vanderbilt in Tennessee is a good one I hear. They are also doing lots of research. I went to mayo in Arizona. Ramakentesh is really well versed in this and could probably tell you all the doctors and their theories! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 If I could go anywhere Id go to Blair Grubb or Vanderbilt. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted June 8, 2012 Report Share Posted June 8, 2012 If I could go anywhere Id go to Blair Grubb or Vanderbilt.I'm curious.. is that because of the treatment after the diagnosis? In other words, are those your 2 favorites for figures out the best treatment plan once they make a dx? Quote Link to comment Share on other sites More sharing options...
humbled_pie Posted June 8, 2012 Report Share Posted June 8, 2012 I haven't seen anyone other than Dr. Abdallah, but I also have no reason to. We originally chose him for our care because there are so few doctors who will see and treat children prior to adolescence and our 10 year old needed to be seen. She's actually not being treated by him at this time, but I am and I really could not be more pleased.I admit I often end up in tears at my appointments, but it is only because after decades of doctors who didn't know what they were talking about (prior to my diagnosis), the validation and comfort - not to mention actual help for my symptoms! - is overwhelming (in a great way) sometimes. Apparently, he makes a lot of his patients cry and he still can't quite understand why. I *love* that he is so *human* and talks to us like that and shares things like that, too!His practice is The Children's Heart Institute, and he only sees patients out of the Reston, VA office now. Quote Link to comment Share on other sites More sharing options...
sarahm Posted June 9, 2012 Report Share Posted June 9, 2012 My advice would be to go to a specialist that is nearby and can follow you regularly. I feel much better taken care of now that I have a POTS specialist that is close to where I live and can see often. I am happy with my dr., but mostly I am happy that I have someone who understands POTS, is nearby, and I can see regularly. I was so frustrated bouncing around from dr to dr. I think it would drive me crazy if I had to travel cross country to go to Mayo or Vanderbuilt for every appointment. I certainly wouldn't hesitate to do that if I had no other option. But if you have a good specialist nearby I would recommend that. Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 9, 2012 Report Share Posted June 9, 2012 I agree with sarahm. I think it is very important to have a specialist close to where you live. We started out seeing a doctor in another state but found it was just too hard to travel back and forth for follow up appointments. Like Sarahm said, if it is your only option then you do what you have to do. Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted June 9, 2012 Report Share Posted June 9, 2012 Boston medical center and Beth Israel are both in ma and have autonomic doctors as well as testing! Quote Link to comment Share on other sites More sharing options...
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