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Eds Or Other Collagen Disorder Questions


SpinnyC
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I saw an orthopedist about a joint problem- that no one can figure out. The doctor did however confirm that I am hypermobile. But told me "that's a good thing because most athletes and dancers are hypermobile, and when you're hypermobile you get less arthritis and injuries". But this doc admittedly knows nothing of Pots (and likely nothing of the EDS connection to Pots). I also bruise badly, mostly on my legs, for no reason. I never remember injuring myself yet I get huge bruises or lots of little bruises all over.

For those of you who have been through the diagnosis process for EDS- does this (or another collagen disorder) sound like something I should consider?

And if so, who's the right doctor to see about this- Geneticist or Rheumatology?

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Rheumatology, I think, and contact local EDS or hypermobility organisations to get a specific recommendation. I don't have EDS but my cousin does. I did a poll here the other month about which medical conditions we have, and the rate of EDS or similar was (relatively) sky-high, something like 1 in 6 for confirmed diagnoses and plenty more with suspected EDS/connective disorders, or relatives with those conditions.

"that's a good thing because most athletes and dancers are hypermobile, and when you're hypermobile you get less arthritis and injuries" is right up there with, "Hmm, 80/42 is rather low, I suppose. Well, aren't you lucky not to have high blood pressure!" And frankly, the next time someone says that, I'm going to point out that it's about as helpful as it would be if gynaecologist were to say brightly, "Aren't you lucky not to be a man, because that way you're not going to get testicular cancer!"

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I would get checked out by a Geneticist or a Rheumatologist who is experienced with connective tissue disorders. Your doctor is wrong about people that are hypermobile get less arthritis and injuries. That's not true at all. People who are hypermobile tend to have more injuries, depending on the severity of the hypermobility, and they tend to have early arthritis, in particular Osteoarthritis from joints wearing out from a deficiency of collagen. There is also a lack of clinical distinction between Benign Joint Hypermobility Syndrome and EDS - Type III and some doctors, including Dr. Brad Tinkle, refers to BJHS as EDS - Type III. SOURCE: Joint Hypermobility Handbook by Dr. Brad Tinkle. Dr. Tinkle Dx'd me with EDS back around 2007 or so. He is a Geneticist and leading expert in the EDS community. There is a doctor listing at http://www.ednf.org/ and tons of information about EDS and getting Dx'd. Excessive brusing is a sign of EDS as well. EDS varies in severity immensely from person to person. EDS, POTS, and Chronic Fatigue Syndrome are all interconnected from what my doctor told me. I have EDS and POTS and "most likely" have CFS according to my doctor. I'd keep searching for answers by looking for a doctor experienced with EDS. Good luck!

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Batik- LOL, yes it's probably also up there with- "but you look good".

Weatherman- Great link with information, I appreciate it. Looks like there are only Geneticists in my area that deal with EDS, no Rheumatologists. So I guess that makes my choice between the two easy. :)

Thanks to you both for your responses!

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