Re: knees/sclerodoma

[Guest guest]

Hi Kathy,

Yeah the knees are the worst part of me. I have the nucleor pattern and had a

positive anti-centramere, which is a better prognosis than a positive scl-70.

My mom has CREST and never had skin hardening. She has lung fibrosis and aortic

scarring though which goes along with the progressive, not limited. She had

reynauds since i was a kid then had the tanglieastis (sp?) and esaphageal

complaints in the last five years and was diagnosed. She complains of stiffness

sometimes, but is much more limber than I am, she says it's cause she does Tai

Chi, which I'm sure helps. I can't squat or bend my knees far for a deep knee

bend, not since November. To pick things up off the floor or to get up and down

off the floor is tricky business, I use my arms a lot. I get very stiff after

sitting, when I stand up my legs are so stiff it's hard to walk, and the rubber

knees, what a combo, forget about uneven surfaces! Do your legs get stiff like

this? It's not just my joints, but above and below the knee too.

thanks,

Deb

Kathi in OK <iamladybird@...> wrote: Debbie: I have scleroderma and I

also have the rubbery

knee problem at times my knees hurt so bad I am

tempted to cut them off, but I guess I do need

them...anyway you can have scleroderma without the

skin tightening sometimes it shows up in the tests and

is in the beginning stages I had just raynauds for

years before the skin started....and it is not

uncommon for it to have an overlap with another

autoimmune disease ...what were the results that

indicated sclero....ANA with nucleor pattern usually

indicates SD and scl-70...anyway I am sending some

links on sceleroderma without skin involvement.....and

as in the links sent UTCD can evolve into a

diagnosable disease...hope this helps...KAthi in OK

http://www.sclero.org/support/stories/submissions/gertie/a-to-z.html

A third pattern of scleroderma has been described,

scleroderma sine scleroderma. This

form of scleroderma is unique in

that patients can have any of the characteristic

features

of internal organ involvement

WITHOUT having detectable skin features. Scleroderma

sine scleroderma is extremely

rare. Patients can have any of the reported features

of

disease of the bowels, esophagus,

lungs, heart, and/or kidneys. In an individual

patient,

treatment is customized according

to the extent and severity of involvement of these

internal organs

http://www.sclero.org/medical/about-sd/types/diffuse.html

http://www.sclero.org/medical/about-sd/types/diffuse.html

http://pub59.ezboard.com/fsclerodermadiscussionboardfrm1.showMessage?topicID=108\

..topic

http://www.haps.nsw.gov.au/patrsrcs/patsclero/scleroderma.htm.

--- Debbie

wrote:

>

> Hi a,

> I found a ruemy but won't see him until Sept. Have

> an appointment with my PC next month. Maybe he'll

> do x-ray, would like to know what's going on in

> there. Maybe it's not my joints though, I had some

> results that indicated sclerodoma, but no skin

> hardening. Maybe this is just a quirky thing, but I

> walk funny from it. People tell me I walk

> " gingerly " .

> Deb

> a

wrote: Deb,

> I can¹t say I¹ve felt rubbery. Have you had your

> knees x-rayed?

> Have you had any luck finding another doctor?

>

> Undifferentiated connective tissue disease

> http://or.essortment.com/undifferentiated_rbqw.htm

> http://www.emedicine.com/med/topic2937.htm

>

> a

>

> >

> > Hi all,

> >

> > I'm the UCTD girl, and finally figured out how to

> explain part of the reason I

> > have problems walking and was wondering if anyone

> else ever experienced this

> > or if I'm just wierd. My knees feel like they are

> not absorbing the shock

> > when I walk in fact it feels like it's

> intensified, like rubber joints that

> > are not stable and bounce off each other. I know

> this sounds rediculous, I

> > used to say I was just getting wobbly or shakey

> and am trying to learn how to

> > be most descriptive for my Drs visits so they

> understand. I get stiff and

> > painful joints in feet, ankles and hips too so

> that doesn't help. My knees

> > though get very stiff from sitting from about 6

> inches above to about 6 inches

> > below the knees. And feet are stiff to above the

> ankles. Does anyone

> > experience stiffness that extends past the joints?

> I had three good weeks

> > where inflamation was minimal but it's building up

> again. Taking 2,400 motrin

> > again to hopefully bring it down before it gets

> out of hand.

> > thanks,

> >

> > Deb

> >

> >

> >

> > ---------------------------------

> >