Ehlers-Danlos?

Has anyone here heard of this syndrome? 

 

I wonder what type of doctor they see for this? I have just about every single symptom listed .... and so do several people in my family. It looks like I would need to see a geneticist, but there aren't any near me and I don't have a ton of money.

Not like there is a cure for it, but my dad has had problems with aneurysms .... and I guess it would be good to monitor that in the future instead of waiting for one to rupture! Also, it would explain so many things to me ... sometimes I feel like all of this must be in my head ... but you can't 'imagine' hyperflexible joints that dislocate, sores that always take weeks to heal, feet so flat (at the age of 35) that I have been told I won't be able to walk by the time I'm 60 (3 different dr's and a physical therapist all said the same thing). I'm 6' tall, have been picked on since I was a little girl about how long my fingers are, I had to have a palatal divider when I was a kid because my 'mouth was too small and my teeth were all jumbled and growing in the wrong places". (my dad still laughs about hearing the orthodontist say MY mouth was too small!) I had to have 8 teeth pulled in one day, just to make room in my mouth for the rest of my teeth! I have osteoarthritis in my hands, knees, neck and feet. I am extremely weak .. can't last more than 3 minutes on an eliptical trainer ... I FALL OFF. ALWAYS had poor muscle tone. In fact, I can't find an exercise that gets my heart rate up before my legs and arms give out. Somedays, I can't even dry my hair because my arms are too tired from holding them over my head! I have pins/needles all over .. especially hands, arms, feet. I ALWAYS have blood in my urine ... always. No one can figure out why. And I've had to have several iron infusions because of anemia. I have chronic pelvic pain. I have fibromyalgia, I have IBS symptoms, I have anxiety, and I am always tired.

Good grief ... I sound like a mess .... but it's all REAL. And if you look up the symptoms list of Ehlers-Danols ... IT'S ME!!!!!

Now what do I do? I guess I'll start with a call to my GP ... he's a nice guy ... maybe he'll know what to do.

It seems like something that I would have known about before now. I wonder how many people have it and don't realize it until they are adults?

weird .... I've been thinking about it all day. Tried to call my family Doc this afternoon .. but they closed early for SNOW.

Just because it's rare, it doesn't mean you aren't the lucky one to have it.

The husband of the married couple knew he had it but his wife didn't know she had it. She was diagnosed when her husband had his doc check her out.

I hope you find your answer soon.

do-over, I am sorry to hear that you suffer from all these things and that it could be related to something new. Try not to stress too much as you investigate further....it will only frustrate you while you try to get answers. Just take care of yourself as best you can for now....that's important too.

hugs,
Pam