Anyone with scleroderma?

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Nancy

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Jun 10, 2001
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9,896
Location
upstate New York
Joe is being evaluated for this or some other autoimmune disease. Something is causing slowly advancing lung fibrosis and hardening of skin on his lower legs.
 

EVELYN

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Jun 17, 2002
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2,149
Location
VIRGINIA
Hi Nancy

One of the girls I used to teach with mother had it. If I'm not mistaken, Johns Hopkins has a very good program that is researching it.....If that's not accurate, let me know and I'll call Linda and find out where her Mom went.

Evelyn
 
N

Nan

Guest
Hi Nancy (and Joe), I was so sorry to read your post and discover that you and Joe are now dealing with something else. Seems like you have had more than your share, for sure!

Hope they can find out what it is soon, and that there is an easily available and tolerated treatment.

Keeping you in my thoughts.
 

Nancy

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Joined
Jun 10, 2001
Messages
9,896
Location
upstate New York
Well, if it does turn out to be scleroderma, it would answer many questions that we have had over the years, and may be the hidden smoking gun for a lot of Joe's problems.

Scleroderma can be a cause of Pulmonary Hypertension. Everyone thought his PH was secondary to his heart problems, except for his original PH specialist who tested him every way possible and could find nothing (heart-wise) that would cause PH, since his valves were operating well. So if he has scleroderma, then it could be secondary to that, not the heart.

He has some kind of "kidney failure flares" where out of the blue, his kidneys stop working efficiently and his CHF becomes hard to control. We have no idea what is causing this. He is so tightly controlled with meds and diet. But scelroderma can cause this kind of flare-up.

His progressing lung fibrosis is a total unknown, but scleroderma can cause that.

And then there is his very hard skin and underlying muscle on his lower legs and feet and toes. Many doctors said this was from fluid retention, but it is like a rock--I doubt that fluid would cause that. And when his fluid is mostly gone, the hardness is still there.

He also has hepatosplenomegaly, and scleroderma can cause that. No one has been able to adequately explain what causes this other than ascites. But the enlargement can be pretty pronounced and even painful.

And he has oval lesions on his legs, and everyone thought it was a fungus problem or caused by inadequte bloodflow, but scelroderma can cause that too.

And he does have small red spots and purpura on his skin, and scleroderma can cause that.

It's definitely something that is of a systemic nature and I'm hoping that they will find the culprit that ties them all together.

We'll have to wait and see. Joe is a "work in progress" :)
 

Roncul

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Joined
Jan 14, 2010
Messages
8
Location
NY and FL
I have systemic scleroderma as well as a bicuspid aortic valve (surgery scheduled for 4/10). I don't think they're related because the valve problem is congenital but the scleroderma (with lung fibrosis) makes the surgery riskier than normal.
 

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