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yikespanic

Recommendation of Dr to diagnose possible EDS from Cleveland Clinic Cleveland Oh area????

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My daughter has been having similar symptoms to some of mine and her primary ran blood work which seems to point to some connective tissue disorder.  She was referred to a Rheumatologist who would not listen to her long enough to hear her concerns or listen to her describe her symtoms.  She left nearly in tears.  Please if anyone has a referral to what type Dr or who she can see who is a knowledgeable and caring physican it would be greatly appreciated.  She has to go to the Cleveland  Clinic or one of its satellites due to insurance.  Thank you in advance!

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Somebody can correct me if I'm wrong, but I thought there was a Dr. Jaeger at the Cleveland Clinic.  I know I've seen his name a few times and thought that was where he was from.  I'm thinking he's a cardiologist.  Might check him out.  Look for a cardiologist or neurologist (good luck with those).   We know about rheumatologists, too.  My daughter saw one, too.  The first visit she dismissed all her complaints and drilled her about anything that did make it through.   The doctor couldn't figure out why my daughter didn't exactly know how long she slept at night.  Well, are you counting the times she gets up and has to go to the bathroom again, or the time she needs medicine for her stomach, or.... you get the picture.  We actually had to go back about a year later.  I didn't want to see her again, but our PCP was insisting that she was a good doctor, give her another try.  We sat down and the first thing she says "I thought we weren't a good fit."  The receptionist had asked why I had cancelled her previous follow up appointment, so that's what I said.  She told the doctor!  Moral of the story.....stay clear of rheumatologists.  My mom has a good one, so they are out there, just few and far between. 

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@yikespanic - check out thedysautonomiaproject.org, they have a physician list and have 2 doctors from Cleveland clinic listed on it. 

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