ETOLY Posted September 25, 2004 Report Share Posted September 25, 2004 Hi,I notice that there are several of you that have POTS in the D.C. area. Can anyone recommend a primary care doctor who understands this syndrome?Thanks! Quote Link to comment Share on other sites More sharing options...
ethansmom Posted September 25, 2004 Report Share Posted September 25, 2004 Hi! I just moved from the DC area. There are several doctors that I've heard of that specialize in POTS, but I was never able to find a general practicioner who really understood it. Do you already see a POTS specialist? Some of the popular names in the area are: Dr. Ramesh K. KhuranaHawthorne Office Park10780 Hickory Ridge RoadColumbia, MD 21044410-997-3113Dr. Alan Pocinki2141 K St. N.W.Suite 606Washington, DC 20037202-223-2282Dr. Robert Hoeldtke WVU Medical School HSN Morgantown, WV 26506 Phone: (304) 293-4125 Dr. Hoeldtke has had some great success with various treatments. I have never seen any of them personally, but have heard some good about each.I'm sure some others will have good information for you- you can also post on the Virginia board for more specific info. With my PCP I just gave them the basic overview and then they worked in conjunction with my specialist when needed. Good luck to you!! Quote Link to comment Share on other sites More sharing options...
ETOLY Posted September 25, 2004 Author Report Share Posted September 25, 2004 Hi ethansmom,Thank you for your response. Yes, I have seen Dr. Khurana. However, I need to find a primary care doctor to manage and understand all the doctors and issues involved. Otherwise, you start spinning your wheels again with doctors who second guess diagnoses. Then you spend money and time on new and usually unnecessary tests. I have heard of Dr. Pocinki, but don't know anything about him including what type of doctor he is. Quote Link to comment Share on other sites More sharing options...
futurehope Posted September 26, 2004 Report Share Posted September 26, 2004 Etoly, I would think that it would be near impossible for a primary care physician to have the knowledge base necessary to treat the likes of us. I, too, go to Dr. Khurana and I've asked him to recommend specialists in the areas of medicine where I am most affected, namely, endocrinology, cardiology, and gastroenterology. I do not expect my primary care physician to know enough about the individual aspects of my physiology as they relate to POTS, though I DO have a PCP in Baltimore who has heard of POTS. That's a start. But since POTS can affect so many different aspects of our bodies, how COULD a PCP possibly do anything but hold onto the notes from everyone else? Even Dr. Khurana is aware that he does not have the knowledge necessary to treat the endocrine aspect of this problem, or the cariological aspect, etc., so how could a PCP do it with even less knowledge?Anyway, from what I've read on this forum, I thought the best bet would be to have the physician who is treating you for POTS (Dr. Khurana, in this case) recommend a colleague of his that understands POTS who could help you with the specifics of a particular body system. That way, the recommended doctor could confer with Dr. Khurana, get his input, is aware of your POTS diagnosis and then both of them, together, can work for your good (you hope). For example, when you next see Dr. Khurana, if you are having gastro problems, you can tell him that and ask HIM for a recommndation for a gastro person who understands somewhat about POTS. Quote Link to comment Share on other sites More sharing options...
ETOLY Posted September 26, 2004 Author Report Share Posted September 26, 2004 Thanks, futurehope, for your input. I completely understand your point, but the problem is that sometimes the right hand doesn't know what the left hand is doing, so chaos can occur. Therefore, it is better to have someone there in the middle managing it all. That is what I have experienced and it just adds to all the frustration. I know I have to (and have been) my own advocate, but at some point, a medical professional needs to be there to help. A good, knowledgeable, hands-on PCP is key! Quote Link to comment Share on other sites More sharing options...
goldicedance Posted October 19, 2004 Report Share Posted October 19, 2004 I have a wonderful internist in suburban Maryland, right outside of DC. Regrettably I don't think she is taking new patients. The main thing is to find a PCP who is curious. doesn't take no for an answer, a great diagnostician, and who is most willing to take on the job of coordinating your care.I go to Dr. Hoeldtke at West Virginia University Hospital. I have been taking Octreotide since December 2003. Dr. H is involved with reseach using octreotide. Fortunately my insurance covers Octreotide. Without insurance, I never could have afforded a treatment (long-term) that costs about $2,700 a month. I thank G-d everyday that my government health insurance covers these drugs.Let us know if you find a pcp you are impressed with. If you would like to "talk" with me, send me a signal (i.e., an email). This offer goes out to all of you in POTS land! Quote Link to comment Share on other sites More sharing options...
ETOLY Posted October 19, 2004 Author Report Share Posted October 19, 2004 Hi goldicedance,Thanks for the information about Dr. Hoeldtke. What is his speciality and how does Octreotide help? Also, if I emailed you directly would you be open to giving me your PCP name? Thanks!Etoly Quote Link to comment Share on other sites More sharing options...
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