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Eds - How Important Is A Diagnosis?


Terrier

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Hi everyone, sorry if this seems like a silly question. Since being diagnosed with POTS a couple of years back and doing a fair bit of reading about the possible causes I've had the suspicion that I've got some EDS kicking around as well. A quick self-test suggested I was at least borderline and today having finally mentioned it to my GP (along with doing a couple of party tricks), she seemed to come to the same sort of 'Hmm, maybe' conclusion and has referred me to see a rheumatologist.

Now I'm wondering if I might've been better off continuing to live in ignorance and trying to manage the POTS symptoms as best I can since, as far as I know (and please do correct me if I'm wrong!), there is nothing that can really be done about EDS either way and there's also the danger that having another label flying around in my head might contribute to more anxiety and worry in the long run. On the one hand I have the desire to know but there's another part of me thinking there doesn't really look to be an upside to knowing.. If that makes sense!

So is there something I'm missing here? Should I be happy that I'll either find out or rule it out?

Any thoughts most welcome :)

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I started with pots dx, pots doeciskist suggested eds went to Fam practice and they ran panel all negative however no test for type 3, so off to rheum,hypermobile. Not interested in seeing me for anything but my raynouds.

I feel it's important because it gives a cause for my pots and I'd like pt, surgeons, dentists and the like to know because it could effect my health in other ways. Small town so I may venture to see a geneticist

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For me having a diagnosis has been a good thing, if I was aware of my POTS earlier then I could have maintained more cardio exercise, increases water intake, and not overly push myself like I used it. I feel like knowing the diagnosis earlier would have helped me from getting to the place I am at now. That being said knowing my diagnosis doesn't mean I have to constantly be thinking and worrying about the prognosis, but it does help me bring a daily awareness to my body's needs which has been helpful for my overall quality of life, though I can see how over thinking could make things worse.

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I have Hypermobile EDS. I was diagnosed by a Geneticist. I do feel it is important to know, at least for me it has been. There were some odd things (besides the odd POTS things) that were explained by the diagnosis. My geneticist happens to be an EDS expert so she is very good about trying to manage her patients pain levels, especially with alternative therapies coordinated with traditional medicine.

As Bigskyfam says above, I have also found it important to share with surgeons, PT, and the dentist.

Because there is a higher prevalence of some conditions comorbidly with EDS patients as opposed to the general population, my diagnosis has also helped point us in the right direction as far as looking for additional diagnosis such as coagulability issues, which it turns out I have. I seriously doubt I would have been sent to a hematologist if I didn't have the EDS diagnosis because my basic bloodwork looks very good on paper.

Hope this helps. If you have specific questions I can answer about EDS, feel free to ask or PM me.

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