Pistol Posted May 15, 2018 Report Share Posted May 15, 2018 Hi - I have POTS and my husband has symptoms of joint-hypermobility. My 13 year old daughter has been displaying symptoms of POTS as of late and she also shares all of the hypermobility signs of my husband ( she can bend herself in half and has many abnormal joint issues ). I am hoping to save her from developing full-blown POTS ( I am disabled from it so she is very scared of getting it too ). I would like to have her checked for EDS but do not know what doctor to ask, so here is my question: what type of doctor diagnoses EDS? I would like to go that route before I send her to a cardiologist or autonomic specialist because of her fear of getting POTS. I really would appreciate any Input and thank you in advance. Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted May 15, 2018 Report Share Posted May 15, 2018 I saw Dr. Alan Spanos in Chapel Hill, NC. He was excellent. In the end I wasn't diagnosed with EDS, but with features of Hyper-mobility. He did a really thorough evaluation and explained things very well. I've heard of other EDS specialists as well. I think the online support group "Inspire" is dedicated to EDS and you can find a lot of information there as well. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 15, 2018 Report Share Posted May 15, 2018 My daughter has EDS and POTS. A neurologist diagnosed her POTS and a geneticist diagnosed her EDS. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 15, 2018 Author Report Share Posted May 15, 2018 @Christy_D - thank you, I thought it might be a geneticist but wasn't sure. Do they take a blood sample to confirm the diagnosis? Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted May 16, 2018 Report Share Posted May 16, 2018 Pistol - There are blood tests for most forms of EDS, but not for Type III, the Hypermobility type, which a lot of people with POTS have. I do think it's important to be diagnosed properly. I was actually misdiagnosed for 1 year. I was told I had it. However, when I saw the specialist, he confirmed that I definitely didn't. It was really important, because he actually diagnosed the root cause of my back pain and I finally got treatment! There are different types of subsets of the Hypermobility type as well. It's an interesting field and more information is still emerging. I read a lot about it when I thought I had it.. you can also have Joint Hypermobility without having Hypermobile-EDS. Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted May 16, 2018 Report Share Posted May 16, 2018 This page has a ton of information about the Hypermobility Type: https://edsinfo.wordpress.com/resources/benign-hypermobility-syndrome-vs-eds/ Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 16, 2018 Author Report Share Posted May 16, 2018 Thank you so much @Bluebonnet08 - that is very helpful! Quote Link to comment Share on other sites More sharing options...
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