MomtoGiuliana Posted April 7, 2004 Report Share Posted April 7, 2004 Futurehope and anyone else: I would be interested in feedback on Dr. Khurhana, or any other doctor you see in the Washington, DC area. My sister who has just been diagnosed with POTS will eventually be moving from GA to the DC area and will need a POTS specialist in the DC area.Thanks in advance!Katherine Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 8, 2004 Report Share Posted April 8, 2004 Katherine, Dr. Goldstein, at NIH, is also in the DC area. I believe he's on the physician's listing here and on NDRF.Nina Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 8, 2004 Report Share Posted April 8, 2004 Dr. Goldstein, I don't believe, sees "walk-in patients" or have a private practice. He is conducting a number of autonomic nervous system studies, including some on POTs. Quote Link to comment Share on other sites More sharing options...
pamyla Posted April 8, 2004 Report Share Posted April 8, 2004 This is who I have been seeing although I'm not sure he's been accepting any new patients.Dr. Alan Pocinki2141 K St. N.W.Suite 606Washington, DC 20037202-223-2282POTS & NCS Primarily sees patients that have orthostatic intolerance as a feature of another syndrome, such as CFS, Ehlers-Danlos and related hypermobility syndromes. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 8, 2004 Report Share Posted April 8, 2004 Goldicedance, while Dr. G is at NIH, I know he has seen some patients outside of the studies...or at least he did in the past when I was in one of his studies 3 years ago. I've also been accepted to the current study and am slated to go this summer.Nina Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 8, 2004 Report Share Posted April 8, 2004 I, too, am slated to be in the study dealing with the measurement of autonomic system dysfunction. I understand the project is on hold somewhat because they are waiting for some new equipment.I'de be interested to hear how you did during the study as well as the role that Dr. Goldstein plays in ongoing patient care after the study.Did you go for the 1-day evaluation? I was told that, after reading my files, Dr. Goldstein did not think the 1-day evaluation was needed. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted April 8, 2004 Report Share Posted April 8, 2004 No, I don't need the 1-day eval. I think they use that to establish which dx category...but since I spent a week there once already, that's not necessary for me.Dr. G provided a report at the end of the project--which has been useful to share with my doctors. That's the extent of contact, except to request my participation in a genetic study a year later.As for the study I was in 3 years ago: parts of that study are now closed. It involved lots of tests including MRI, PET scan, a right-heart catheterization, and tons of blood draws. Here's the study protocol listing--http://clinicaltrials.gov/ct/gui/c/w1b/sho...e_ct=ip3khu0ma1andhttp://clinicalstudies.info.nih.gov/cgi/de...994-N-0186.htmlandthe genetic study link is now gone...but it was to see if there was a defect in a gene known to cause BP problems.Nina Quote Link to comment Share on other sites More sharing options...
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