Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Tori, Get thee to the NIH for this, they are in the midst of an important study right now that you can get on board with. email: francomanocl@... phone: Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Tori, What about contacting Judy King to see if she knows of a doctor?? She's the president of the Western NY group that put on the conference. I would think she could refer you to someone? Love Lana In ceda , " Tori M " wrote: > I've been on before (25/f, married, HEDS, upstate NY) and somehow > got booted/email kerplutzed on me. I have some questions about > getting a dr to completely diagnose me with HEDS, as I can't seem to > find one in my area. AND... the dr I just saw (rheumatologist) seems > to think I can't have EDS as I don't have stretchy skin, and it's > too rare. I'm planning on (re)trying for SSDI, and I need a clear > diagnosis as I've been waiting to hear on a decision about SSDI with > fibromyalgia as my dx forever, and I know it won't be approved (2nd > appeal). So any help would be appreciated. I live near Albany, NY > but could go as far downstate as Westchester or upstate as Warren > County. Thanks!!! > > Tori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 I have contacted the NIH at your suggestion... let's see what happens!! Tori 25/NY/HEDS > Tori, > > Get thee to the NIH for this, they are in the midst of an important study > right now that you can get on board with. > > email: francomanocl@m... > phone: > > Jill Quote Link to comment Share on other sites More sharing options...
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