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db2504

Eds And Pots

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We r seeing my daughter's neurologist on Wednesday and wondering what type of doctor is needed to diagnose EDS? For anyone who has it, is there a lot of pain associated with the hypermobility type? Do you have skin elasticity and scarring. My daughter does have the hypermobility issues but not sure about the elasticity. How were you all diagnosed?

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My daughters were diagnosed by Dr. Jaradeh (neurologist) at Stanford University's Autonomic Clinic. It didn't take him long to figure it out. My oldest daughter's joints are like one of those marionette dolls that when you set them down they sprawl everywhere. He picked up her leg and said to his PA 'come here, you've got to see this'. So by the end of our very long day there, he said, without hesitation, that both of my daughters have Ehler's Danlos-Hypermobility Type. They have some of the worst dysautonomia that their doctors have seen (2 neuros, cardio, PCP, chiro). My youngest has more of the skin elasticity, and not as severe of hypermobility. Both have GI, oldest has severe headaches and migraines, and both have POTS. You don't have to have all of the symptoms to be diagnosed. Everybody is different. Hope this helps!

By the way, most people will recommend going to a geneticist for a diagnosis in the U.S. (rheumatologist in the UK), but when we went to one, he wasn't very interested in making a "definite" diagnosis on it.

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