Neurologists in Mclean, VA

Type 1 is now called Classical EDS, BTW; the numbered system was replaced in 1997 by descriptive names. You may be able to find someone through these resources. EDNF Physicians Directory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 The next two don't have contact information, but if you see someone you'd like to contact, Google them: EDNF Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Speakers for 2011 EDNF National Conference http://www.ednf.org/index.php?option=com_content&task=view&id=2068&Itemid=88889230, for the 2012 http://bit.ly/H1sbYR, for the 2013 http://bit.ly/Z39hXX You might also ask at the EDNF Inspire Online Community, http://www.inspire.com/groups/ehlers-danlos-national-foundation/.

Oh, one source I forgot—try the EDS New England/Massachusetts Support Group http://bit.ly/SM6O05 for information.

Yes, she's on the Professional Advisory Network. She's there as part of the TAD (Thoracic Aortic Disease) Coalition (http://www.tadcoalition.org/tad/). [M]

I was able to go to the Fund Raiser today but Dr. Milewicz was unable to make it but Tracy Bensend, MS, who is a Genetics Counselor and Instructor was there. She works with the Dr. She was there to represent the John Ritter Research Program. She is soooo nice and I probably talked her head off! I told her some of my family history and some of my issues and concerns and she advised I may want to get tested for VEDS. I was just so excited to talk to someone who knew what I was talking about (besides my neuro) and how I felt!!

Johns Hopkins, probably; some world-renowned EDS experts are there, and I would expect the neuros to be knowledgable. The EDNF Center for Clinical Care is part of GBMC; they might have a recommendation. The much-experienced-with-EDS Fraser Henderson is probably the top of the list of neurosurgeons. http://metropolitanneurosurgery.org/practice/henderson.html For presentations from him, see the conference pages: Session Handouts 2012 Conference http://www.ednf.org/2012-annual-conference Session Handouts 2013 Conference http://www.ednf.org/2013-annual-conference Session Handouts 2014 Conference http://www.ednf.org/2014-annual-conference Session Handouts 2015 Conference http://www.ednf.org/2015-annual-conference 2014 Physicians Conference http://www.ednf.org/2014-physicians-conference http://ednf.org/patient-webinars

Type 4 is Vascular. Type 7 is Arthrochalasia. http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969 Physicians DIrectory http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=99999999 Professional Advisory Network http://www.ednf.org/index.php?option=com_content&task=view&id=21&Itemid=213 Referencing pain: EDNF Pain Management Medical Resource Guide available from http://www.ednf.org/index.php?option=com_content&task=view&id=2123&Itemid=88889247 "Chronic Pain is a Manifestation of the Ehlers-Danlos Syndrome" (Sacheti et al, 1997) http://www.ednf.org/index.php?option=com_content&task=view&id=1331&Itemid=88889208: Rodney Grahame, "Joint Hypermobility Syndrome Pain" http://www.ednf.org/images/stories/pdfs_medical/2010/2009_Grahame_CPHR_hypermobility.pdf Medicinal Marijuana: A Patient-Driven Phenomenon http://www.ednf.org/index.php?option=com_content&task=view&id=1960&Itemid=88889064 Normal Progression of Pain Response http://www.ednf.org/images/stories/MRG_Research/pathogenesisb.pdf Treatment of Nonmalignant Chronic Pain http://www.ednf.org/images/stories/MRG_Research/treatment_of_nonmalignant_chronic_pain_aafp.pdf Dr. Howard Levy, A Primer on Pain Medications http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 Pain Management Articles http://www.ednf.org/index.php?option=com_content&task=view&id=1186&Itemid=88888988

Where are you? Any doctor can diagnose or treat EDS; there is no cure, so you treat the symptoms; there are a handful of EDS specialists across the country, but they're very busy and backlogged for appointments. It's entirely possible you're having neck trouble if you have EDS, the spine is full of joints that can be hypermobile, and you're possibly experiencing craniocervical instability. If your current treatment isn't working, possible get a sitting/standing MRI for reasons your neurologist can see for themselves in" Syndrome of occipitoatlantoaxial hypermobility, cranial settling, and Chiari malformation Type I in patients with hereditary disorders of connective tissue", which can be found at http://prettyill.com/resources/view/dr._francomanos_cci_article Also send them to Dr. Fraser Henderson, "Deformation of the Nervous System in EDS Patients" and Dr. John Mitakides "Temporomandibular Joint & Cervicocranial Dysfunction in the EDS Patient" in the 2011 EDNF Conference Handouts section http://www.ednf.org/index.php?option=com_content&task=view&id=2052&Itemid=88889219 [EDSerMark]

I know it is a ways to travel, but Dr Trepane is our geneticist at the University of Iowa Hospitals & Clinics (Iowa City, IA) & has been FABULOUS about coordinating care with other specialties. I don't know that would be an option for you but she is great. Maybe look for a research/university based hospital/clinic in your area that has a good genetics department? Just throwing out ideas...