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Ehlers-Danlos Syndrome User Group
questions???
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
154 members
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questions???

I am 19 yrs old and looking into  EDS type 3 (hyper mobile type) as my neurologist suggested to get checked out for it because Of my severe scoliosis and joint pain. The symptoms all match up pretty well except I don't get dislocations ( i don't think) I can pop my left hip out but the dr said it was something with the IT band I have been able to do this since like age 9. also I was always able to do weird things other kids couldn't like turning my leg around, but since my back got worse Ive gotten less flexible. My question is is it possible to have this form of EDS even if you can't do all of the things for the test (ex: can't touch ground anymore, and my thumb doesn't quite touch my arm there is about a cm in-between. but I can do other odd things like turning my leg around and pushing fingers back past 90 degrees? Am also being tested for chiari and some auto immune disorders, Ive heard they can appear with EDS. thanks for listening
-Kristin
3 Comments
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620923_tn?1393294254

  Hi Kristin and welcome to the EDS group.

SO many of us with Chiari also have EDS and I strongly suggest getting tested and ruling it out b4 u have ne surgery if ne kind as having EDS can affect how we feel and heal post op.

Please review  the videos posted above in the top thread-http://www.medhelp.org/posts/Ehlers-Danlos-Syndrome/-Utube-videos-of-EDS-dr/show/1623053

I was the first to say I did not think I had EDS and testing shows I do.....so, u have had many of the signs far more then I ever did so do get this checked. A good rheumatoid Dr should be able to help and then u go to a geneticist to determine the type of EDS it is.

I could not touch the ground either bcuz with chiari I could not bend over with out losing my balance....lol....

Also many with Chiari and EDS can also have POTS or ICP....we need to rule out all related conditions as symptoms can be similar.
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3109210_tn?1342664082
thank you !!!
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1903798_tn?1333908888
Yes mobility can decrease with age and we can't do the whole list usually.  Here is also many types of EDS.  As Selma said (we both have chiari) do get checked.
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