Ehlers-Danlos

[scarbrough987]

So i have read a little about EDS before but never extensively until someone suggested it in a post and all I can say is wow. I did the Beighton test and got a 5 or 6 one was a little iffy, and when reading through I realized I have a long list of symptoms:
History of scoliosis
mitral valve pro lapse, and tricuspid valve insufficiency
joint pain growing up
Purple-red splotchy pattern on hands and feet (livedo reticularis)
Plus several more. I found that my joints are much more mobile than I had thought, not to the point of pooping out of place but simple things I thought everyone can do but apparently not. Plus I also found out after reading some things last night that I get some relief from the head pain when my husband lifts up on my head, although temporary but it makes sense. I'm sure most of you already know all about these things but they are revelations to me!  
I think if i do really have it it is probably very mild because I don't have chronic joint pain or anything like that. Like I mentioned before I haven't gotten chiari confirmed and have keep getting told its borderline so i have no solid info but everything sure seems to fit a little too well to be a coincidence. But from what i hear I can probably expect to keep getting the runaround long before I can get an answer. Luckily my pcp is invested in it and believes this is what it is and has been calling around to try to find the best specialist in our area.
anyway thanks for letting me ramble.

[soccero]

i no what u mean! like i could always do the splits and some cool tricks but i didnt no that there was a reason for it! good luck in finding help!

[selmaS]

  Dang- I also wanted to include this link to the EDS group here on MedHelp there are videos that r very informative.

  http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc

[selmaS]

  Nah, that is chiari ...pooping poping we all know what u meant...lol...no worries.

Well, now u know y I am always saying get checked for this...EDS can cause pain and with cervio cranial instability which u indicated by the lifting of ur head and getting relief  may be more of y u have pain then ur chiari...but , it is all related and a good Chiari dr will be able to figure that out for u.

Plus, those with EDS tend to heal slower and may reject foreign matter, so it is important to know this b4 surgery so that ur patch if one is needed is harvested from ur pericardium and ur Dr does not use bovine , cadaver or a synthetic one we tend to have a higher risk of rejection.

  SO as I always say it can affect how u feel and heal post op. Find out and make sure ur NS knows about EDS.

[scarbrough987]

I just realized what I wrote instead of popping. That's embarrassing.