MomtoGiuliana Posted February 16, 2015 Report Share Posted February 16, 2015 Does anyone know of any doctors in this area (that we should add to our list of doctors)? http://www.dinet.org/index.php/physician-list There are a couple of doctors listed: Alan Pocinki, Hasan Abdallah, Ramash Khurana Any others anyone is aware of? One of my college roommates from X! years ago called me this weekend. She is diagnosed with fibro (and on disability due to it) but it seems she may have POTS (and honestly I think she could have EDS, or something similar, she has regular dislocations and sprains and is hypermobile). She needs to see a doctor in the northern VA area with expertise in dysautonomia. Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 16, 2015 Report Share Posted February 16, 2015 Don't know about N VA, but there are 2 well known EDS experts in Baltimore, Dr. Clair Francomano at Greater Baltimore Medical Center (GBMC) and Dr. Howard Levy at Johns Hopkins. Both generally have long wait lists (sometimes more than a year), so if she wants to see them, best she call asap to get the ball rolling. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 16, 2015 Author Report Share Posted February 16, 2015 Thanks. I did tell her about Francomano. She is not concerned about EDS right now but about her POTS symptoms. I did encourage her though to look into both b/c I think both are a possibility for her.. It's pretty weird that a former roommate is dealing w a lot of the same stuff I have been. Either that is a major coincidence or these conditions are more common than is realized. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 16, 2015 Report Share Posted February 16, 2015 The more I research, the more I think these conditions are more common than is diagnosed. So many other diseases have forms of autonomic dysfunction as symptoms and I know it is believed (among EDS medical practitioners) that EDS is significantly underdiagnosed. I don't know Dr. Levy personally, but I've been a patient of Dr. Francomano for over 2 years. She is extremely well versed in associated conditions like the various autonomic issues and mcas. She is good about addressing the whole patient including referrals to other appropriate specialists. I see Ramesh Khurana also. He does have an office in Columbia, MD which is a suburb half way between Baltimore and DC. He specializes in autonomic dysfunction and is a certified headache specialist as well. He is very good and keeps up on all the latest research. He seems very business- like at first but he is actually very compassionate and has a very good, very dry sense of humor. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 16, 2015 Author Report Share Posted February 16, 2015 Thanks Katybug! Quote Link to comment Share on other sites More sharing options...
ptalaura Posted February 27, 2015 Report Share Posted February 27, 2015 I also see Dr. Khurana, and I would say the same thing as Katybug did about him. I really like him. Very thorough. Quote Link to comment Share on other sites More sharing options...
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