Eillyre Posted October 10, 2005 Report Share Posted October 10, 2005 Hi all! Just wondered if any of you have recommendations for a good CFS doctor? I was recovering well from my September crash (faster than usual, surprisingly) but have started slipping backwards at an alarming rate for no apparent reason. POTS is not acting up too much, but will if my health continues to regress at this rate. Regardless of this current backslide, I really ought to have someone trying to help me move forward -- I think I'd hit a bit of a plateau pre-September (although I'd give a lot to be back up there! ).In terms of location, I don't really care at this point. I would like to have someone in the NJ/NY/PA region, but am willing to be carted off to a research center if necessary. A physician with an open mind, good follow-up, and reasonably extensive experience are requested -- knowledge of POTS would be nice, but not necessary. My dad and some of his colleagues are making inquiries, but I thought I'd work my "network," too. Thanks!Angela Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted October 10, 2005 Report Share Posted October 10, 2005 Angela,I'm sorry, I don't know any good doctors, but I thought I'd drop in and say good luck. I'm sure someone will know someone .Cheers,Lauren Quote Link to comment Share on other sites More sharing options...
Eillyre Posted October 10, 2005 Author Report Share Posted October 10, 2005 Thanks for the note of encouragement, Lauren! Sending a smile your way!Angela Quote Link to comment Share on other sites More sharing options...
cnm1 Posted October 10, 2005 Report Share Posted October 10, 2005 Angela I can recommnend David Bell near Rochester, NY. He has tons of experience with both CFS and POTS. He does not directly manage Meds but will work with local doctor. He is on the NIH CFS Coordinating Committee and tends to hear about new research. He is the doctor that recommended Dr Grubb for my daughter, Rachel. Here is a link to his web site newsletterhttp://www.davidsbell.com/index.htm One warning - there are no new grand treatments. He has no magic pill. Louise Quote Link to comment Share on other sites More sharing options...
Eillyre Posted October 10, 2005 Author Report Share Posted October 10, 2005 Thanks for the link, Louise -- I'm checking it out.By now, I'm very resolved to the fact that there is no handy-dandy presto-you're-better-again pill or treatment. I'm just looking for any new ideas that could keep me from where I was a year ago -- I hope I never drop that low again. Thanks for the reminder, though -- it's important for us to remember. Much thanks ,Angela Quote Link to comment Share on other sites More sharing options...
briarrose Posted October 11, 2005 Report Share Posted October 11, 2005 I was going to recommend Dr. Bell also. He is suppose to be one of the best and he worked closely with Dr. (?brain fart, sorry but one of the original POTS docs that past away a few years ago.) The two of them made some interesting connections about POTS & CFS. FYI I had an appt the summer of 2002 and they expected a large sum of cash upfront, you might want to call and ask what their current policy is. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted October 12, 2005 Author Report Share Posted October 12, 2005 Thanks for the tip! I'll be sure to check on that!Angela Quote Link to comment Share on other sites More sharing options...
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