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Ehlers-Danlos diagnosis

PostPosted: October 22nd, 2014, 6:19 am
by German2
Hi alltogether,

today I had antoher doctors visit, to follow another trace...Now I am definitely diagnosed with Ehlers-Danlos-Syndrom. This could be fixed immediately without any genetic tests (which are done know additionally of course). Special thanks to yuliasir again, who brouhgt me to this..
The specialist for eds said she had never seen such a strong case of hypermobility before...And she is 100% sure. Score is hit anyway. But she also admitted that this would not explain all of my symptoms in respect to my antibodies against nervous system.

I feel awkward. Whole body has an inner shaking. I can hardly use my hands...So this might be not from eds..But as it is stated that a lot of people here have eds, I thought it is worth a post...


Re: Ehlers-Danlos diagnosis

PostPosted: October 22nd, 2014, 7:05 am
by LKP1231
So you have an explanation! This is a positive thing!

Re: Ehlers-Danlos diagnosis

PostPosted: October 22nd, 2014, 9:30 am
by mwagner
I think so many people here have some variety of EDS. It's nice that a doctor a) knows what it is, b) recognizes that you have it so quickly and is working to treat you.


Re: Ehlers-Danlos diagnosis

PostPosted: October 22nd, 2014, 10:00 am
by German2
I have got the adress of the genetic institute from a support group. The doctor has specialized on diagnosis of eds. My gp did not even heard of that and of course does not take it serious. I can imagine that lots of people share this condition. My mother did and she never knew. But always had a tennis ellbow without playing tennis and not knowing why...I think it was her eds. I know she must have had it to her lifetimes.

Re: Ehlers-Danlos diagnosis

PostPosted: October 24th, 2014, 8:26 am
by Xina535
Holy moly!

You have a confirmed diagnosis! Oh how nice and FINALLY right? Ok, it may not explain it all, but I think you also had other issues like Hashimoto's and maybe these combination of things make your body react the way it does.

I do not mean "nice" as in, it must be "nice" to have something wrong. That is definitely not nice, but nice in know what I mean.

And holy moly - I had not heard of this Ehlers-Danlos....I looked it up, very interesting. Something I will definitely keep in mind if my next results come out normal but I still have symptoms.

You will have to tell me which doctor you saw!

So what is next? What kind of treatment or other tests are you up against?

Re: Ehlers-Danlos diagnosis

PostPosted: October 24th, 2014, 9:47 am
by German2
Dear Xina,

there is absolutely nothing. No therapy except physio...And most of the doctors never heard of it...You can precheck if you might be a candidate if you can do what on the images is shown. "Fingersnake" for example or put your thumb against your arm. Overstrech your fingers that they are parallel to our arm.. put your hands flat on the earth with streched legs...Those things. I can do. And I can turn around my ellbows 180 degree or so..Have a hypermobile tongue...Most of this I never tried, before I saw the pictures. And it is a special condition of your skin. It is overelastic...In the clinic I would have a 100% score...But I still have doubts, though I know that my mother was overelastic, too, and my daughters too...