toddm1960 Posted April 28, 2009 Report Share Posted April 28, 2009 I was dx with Dysautonomia POTS in February of 2009 after 4 years and 25 doctors of finding nothing. Now with this positive TTT I thought things would be downhill, but the problem I have now is of all the doctors I see none of them know anything about dysautonomia or how to treat it. When I say nothing I mean they know nothing!! I also was dx with CFS in December of 2008, I wonder now if this was just to get me off their backs because they have never once tried anything to help or even run one blood test. My question is this, are there any of you out there that live in Western New York, if so do any of you know any doctors that treat this? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 29, 2009 Report Share Posted April 29, 2009 I believe dr Julian Stewart deals with teenagers in your area - and he is one of the leading authorities on POTS. Quote Link to comment Share on other sites More sharing options...
Rachel Posted April 29, 2009 Report Share Posted April 29, 2009 Have you checked the Physicians List on the main DINET site? There are a lot of doctors listed for New York. I'll copy the New York listing for you below. Physicians ListNew York Julian M. StewartDept. of Pediatrics Munger Pavilion New York Medical College Valhalla, NY 10595 914-594-4370Treats Children Information on Dr. Stewart's current research study is available on our website at: http://www.dinet.org/studies.htm Svetlana Blitshteyn, MD6507 Transit Road Unit CEast Amherst, NY 14051716-531-4598Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.Mount Sinai School of MedicineAutonomic Disorders Research and Treatment ProgramDepartment of Neurology, Box 1052Mount Sinai Medical CenterOne Gustave L. Levy PlaceNew York, NY 10029212-241-7315 Autonomic LaboratoryTreats adults Dr. Kiril KiprovskiDepartment of NeurosciencesHospital for Joint Diseases301 E. 17th StreetNew York, NY 10003212-598-2375POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic HypotensionAutonomic LaboratoryTreats adults Dr. Ludmilla Bronfin650 First Avenue., 7th FloorNew York, New York 10016212-532-6298POTS & NCSTreats adults Dr. Max HilzNew York UniversityDepartment of Neurology550 First Ave.New York, NY 10016212-686-7500 ext. 7755POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic NeuropathyAutonomic LaboratoryWill treat children Lindsey Lee Lair, MD35 East 35 St. Suite 202New York, NY 10016917-991-1992Comments:Dr. Lindsey Lee Lair completed her fellowship in autonomic and peripheral nervous system disorders.The Syncope Center at Columbia Presbyterian Medical CenterHarkness Pavilion, Room 342180 Fort Washington AvenueNew York, NY 10032212-305-9940Treats adults Louis H. WeimerNeurological Institute of New York710 W. 168th StreetNew York, NY 10032212-305-1330Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System AtrophyAutonomic LaboratoryTreats adultsDr. Weimer primarily performs testing. The Neurological Institute of New York has a large movement disorders group experienced with MSA, and there is also a syncope center that treats NCS (See: The Syncope Center at Columbia Presbyterian Medical Center). POTS/OI patients are considered on a case to case basis. Quote Link to comment Share on other sites More sharing options...
gwensvilla Posted April 29, 2009 Report Share Posted April 29, 2009 I believe dr Julian Stewart has on going clinical trials..you may get excellent help for little outlay, there is no doubting he is a leading expert, dont think he covers follow ups..worth researching the trials...Gwen Quote Link to comment Share on other sites More sharing options...
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