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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Problems getting testing for EDS through the V.A. HELP!!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Vision › Problems getting testing for EDS through the V.A. HELP!! › Reply To: Problems getting testing for EDS through the V.A. HELP!!

February 5, 2014 at 9:06 pm #4853
Dr. Diana
Keymaster

I wish I had an answer for you, my friend, but I’m not familiar with the VA’s system. I DID want to give you a (((hug))), though, and tell you that until they can run a genetic test and find a defect in collagen (which may never happen — this condition may not be what people have thought it was, actually), “Joint Hypermobility Syndrome” may be as close as you can get. We *really* need for them to drop the word “Benign”, though. Jeesh. “Benign” means “not life-threatening”. Frankly, I beg to differ. Until someone does a longitudinal study to see if our lives are shortened by the effects of this disorder, they are guessing, and in my book, that means the term should not be used. If/when longitudinal studies are done, I think many eyes will be opened as to what the HECK many of us are forced to deal with as time goes by. I believe there is a push to get “Joint Hypermobility Syndrome” added as potentially disabling… These sorts of changes can take a while, though, dog-gone-it! Hang in and GO GET ‘EM! 🙂

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