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Possibility Of Eds???


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I have searched the forums for posts on EDS, but I'm still not sure if there's a possibility I have it, and I want to be a little more sure before I bring it up to my doctor.

I was diagnosed with NMS in March (had it for about 10-12 years though), but I'm about 90% sure I have POTS as well. Going to bring it up to my cardiologist at my appt in December. I'm wondering if EDS is also a possibility because I've always had weird joint issues. Coccydynia, TMJ, pretty much chronic tendonitis in both knees, Tailor's bunions on both feet....I also crack and pop all the time. My ankles, knees, hips, neck, and back pop a lot. Both of my elbows bend backwards, but other than that, I don't think I have any hypermobility.

Is it worth bringing up to my doctor?

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It's worth bringing it up. Not everyone who has POTS has EDS but it's worth considering. Have you googled "beighton score" and checked out those tests? That'll give you a rough idea of your hypermobility, although sometimes people are more hypermobile in other joints than the ones the beighton score grades you on.

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A geneticist or a rheumatologist is usually who will give you the EDS diagnosis. Usually the trick is finding one who is familiar with EDS.

When I was first pursuing a POTS diagnosis, I talked to my cardiologist about the possibility of EDS. He was pretty skeptical although I have a professional background that made me very confident in knowing that I was hypermobile. He was the one who referred me to the geneticist though. When I had an "official" diagnosis of EDS from a geneticist and had been to Cleveland Clinic and got a POTS/NMH diagnosis, they also noted some heart valve issues. That's when my local cardio acknowledged that the heart valve issues were actually present and likely a result of the EDS. I'd had several ECHOs locally and nothing had ever been noted about the heart valves. But once Cleveland mentioned it, then he went back and said "oh yeah, it is there and has been all along. Probably related to your hypermobility." Apparently that can be a common issue with hypermobile patients so cardiologists SHOULD know something about the topic but just depends on your cardio I guess.

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