A Thankyou And Add Me To The Eds Family

[mattsmum]

Hi all

In May this year I posted about my legs getting worse with achy pain. I just wanted to thank those who told me to get EDS checked out. I've been classified as hypermobility type. I scored 6/9 on the flexible scale. My specialist had thought I was making progress and was going to take me off my medications and instead now he's doubled it. Last night was the first night in months that I slept with no pain and right through the night. My specialist was curious as how I knew where I had found my information and I mentioned this forum is a plethora of information and great support. I have sent him the link to here so perhaps he will be doing some of his own research here as he is doing a study on EDS and collagen.

Can't wait to see my managers face when she gets a letter saying I must work with my legs elevated

Thanks again for your support.

Julia

[Michelle F.]

Julia,

What kind of specialist dx'ed you? I have had strong suspicions about eds with myself, and others here have mentioned I should check it out. My cardio has talked about sending me to a rheumatologist, but I want to be sure that the person I see is familiar with eds, just in case.

What is the connection with eds and dysautonomia? I have NCS.

Thanks,

Michelle F.

[MelissaCrystal]

I'd love to figure out it I have EDS. Did they diagnose you just by using the flexibility test though or are there further tests? Because if I just used the flexibility test, I could diagnose myself with a yes, but I want to make sure there is further testing before I rule out a lot of other stuff, you know? I want to make sure a trip to the EDS doc will be worth it--because I'm seeing a Dys specialist in Jan, and I guess I could go to both. Did they use a skin test or gene test or anything?

[mattsmum]

My POTS specialist only did the flexibility test but we are looking into the genetics now. I also have the stretchy skin, bad teeth etc. Not alot extra can be done but it certainly explains a few things.

Julia

[MelissaCrystal]

My POTS specialist only did the flexibility test but we are looking into the genetics now. I also have the stretchy skin, bad teeth etc. Not alot extra can be done but it certainly explains a few things.

Ohh, the stretchy skin is one of those definitive aspects, huh? Mine is stretchy but I have no clue what is normal. My boyfriends seems to be just as stretchy. So confusing ;p I'd be curious to see a pic of the skin being stretched on your hand, if you have time? Is it like those extreme google pics, or is it sort of in-between? Maybe I'll take a pic of mine to ask for your advice, hah!

[mattsmum]

Heres a picture on this web page that shows stretchy skin

Sorry link didn't work here is the address.

http://www.mayoclinic.com/health/ehlers-da...ECTION=symptoms

[MelissaCrystal]

Heres a picture on this web page that shows stretchy skin

Sorry link didn't work here is the address.

http://www.mayoclinic.com/health/ehlers-da...ECTION=symptoms

Well, see it's odd because my skin does that--maybe even moreso, but so does my boyfriend's. I'm just kind of confused. I can't figure out what is normal ><

[mattsmum]

That's probably why its a total score out of 9. Skin being one of the many things being stretchy. You have to reach at least 4 to have a probable diagnosis. I reached 6.

[MelissaCrystal]

My tendons are pretty tight usually in my legs, so I can't do much there, but I can do a lot of weird stuff with my hips (full anteversion of both hip joints), I pass the skin test, and I also pass the thumb-to-the-arm test on both hands. I can overextend one of my shoulders, too, and I have atrophic scars and stretch marks while I am not overweight. My fingers flex backwards, but I can't touch my pinky all the way to my hand. I can do lots of other finger tricks though. I've noticed there are different tests all over the internet---one of them I pass, while another I might not. I've had hip dislocations on both legs (and I'm 22 and otherwise healthy), and I have lots of joint problems in general (loose ankles that wobble and are unstable, bad knees to where I have difficulty with stairs, and very achy joints at night along with carpal tunnel syndrome in my hands). So the test idea just confuses me--it has to be different from case to case, right? I'd love to know if I have EDS, it'd save me a lot of money and trouble. I just hope that if I do get diagnosed with it, they won't wrongly diagnose me with it and ignore all the other possible causes that may be curable. Do you worry about that? You're probably positive you have it though, while I'm not convinced either way =(

Is this the test you took? http://www.arc.org.uk/arthinfo/patpubs/6019/6019.asp Cause I failed that one.

http://www.arc.org.uk/arthinfo/medpubs/6527/6527.asp I pass that one, but it doesn't exactly say it is a test.

[mattsmum]

Yes the first one is the test I took. The only reason why I can't put my hands flat on the floor is because my knees bend back so far lol its really disgusting. And my elbows are only a little bit, rest of it definately. I am sure a POTS Dr would be able to test you to see if you have EDs.

[Maxine]

A POTs doctor isn't really qualified to diagnose EDS. A good doctor to see is a geneticist who specializes is EDS/connective tissue disorders.

One of the complications that can result from EDS is chiari/chiari related conditions, as well as cervical/cranial instability (CCI). It's very important to let any surgeon know you have EDS. People with EDS are more likely to develop complications after chiari or spine surgery-------especially CCI, CSF leaks ect. Other surgeries can also be more complicated-----i.e.---->abdominal surgery.

This is just FYI. I have talked with many people who are dealing with complications, and some of them ended up being MORE disabled as a result of having a surgeon inexperienced in EDS.

Maxine :0)