RE: A few EDS questions...doughy soft flesh and floating kidney

[Guest guest]

I too have floatie kidneys. My liver is loose also. My right kidney

actually lays upside down and sideways, is kinked off, and doesn't

really work. It's been like that for probably more than 15 years. So

far, the left kidney picks up the slack altho it is floppy too, just not

upside down and sideways The doctor who discovered the kidney thing

thinks pregnancies had a lot to do with it... So I got my tubes tied.

That was 14+ years ago...

Sharon

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~*

" ...and just like us, you must have had a Once Upon a Time. "

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> Message: 5

> Date: Wed, 30 Apr 2003 08:38:42 EDT

> From: CDillardda@...

> Subject: A few EDS questions...doughy soft flesh and floating

> kidney...

>

> Hi all,

>

> I am still fairly new to the idea that others have symptoms

> similiar to me,

> not to mention finding out why my mother always beat me in a

> " touch your

> toes " contest...her knees not bent...palms flat on the

> floor...But here goes.

>

> :-D.

>

> Well, I recently told one of my online yahoo group doctor

> that my skin was so

>

> soft and stretchy. That it was like a sponge around the bone

> of my arm. He is

>

> the one who told me to look up Ehlers-Danlos. lol.

>

> Here are my questions:

>

> When I wake mornings or lie down for some hours, I get REALLY

> soft, " squishy "

>

> I call it. I believe I have the dough like skin. The bouts of

> really soft

> skin comes and goes. My hands and ankles get wrinkled -- and

> later I can look

>

> normal. Does anyone have this symptom? I ignored this over

> the years. I

> thought it was my way of getting old.

>

> Also, my skin can be so soft that circulation in my arm is

> cut off. I have to

>

> prop up my neck and other joints when I sleep.

>

> I have a " floating " kidney -- Nephroptosis. The kidney flops

> about as I move

> which allows the ureter kink. This I knew for the last two

> years. But the

> doctor who told me this didn't realize I was an EDS

> person...and neither did

> I back then. But now I wonder. With EDS, my kidney would flop

> about and kink

> even more. Unless of course unknown to all the reason some

> kidney flop in the

>

> first place is because that person has EDS AND undiagnosed floating

> kidney/Nephroptosis.

>

> My doctor said the kidney is not attached well or has a

> stretchy ligament. I

> also think my colon moves about. This mobile pelvic joint

> thing is ... I have

>

> no words to describe. :-<