What about DR. Roy M. Nuzzo in NJ at Overlook Hospital. At least he
is in the east and he might give a referral. He might also suggest x
rays and diagnosing from them and how you walk the way he does with kids.
From what I've read he knows the most about this.
All the best,
Linda
At 04:35 PM 9/2/2006, you wrote:
>you are very right kat. she needs a very good doc. in
>my first post in reply, i said "i am no dr." i wish i
>could help her find a good doc, but, as we all know
>sometimes finding a doctor is very hard.
>
>--- Kathleen Salkin <[log in to unmask]> wrote:
>
> > I'd like to remind everyone that CP is not the only
> > cause of muscle
> > stiffness - there are lot of neurological conditions
> > that cause
> > muscle stiffness - MS, MD, Parkinson's, PPS, and
> > dystonia, to name a
> > few. Even not moving around enough can cause one's
> > muscles to grow
> > stiff with disuse. It's extremely important that
> > Mary Katherine get
> > a definite diagnosis. None of on this list (that
> > I'm aware of) are
> > medical doctors.
> >
> >
> > Kat
> >
> >
> > On 2 Sep 2006, at 21:31, Tamar Raine wrote:
> >
> > Hi mary ,
> > It really sounds like you have cp, and Itotally
> > relate to how you
> > describe
> > walking. I used to walk like a cp-person, but in my
> > 30's it became
> > extremely painful and hard to walk. when i turned
> > 40, I got my first
> > powerchair, which is great, a year ago I injured
> > myself, thought it
> > might
> > be sciatica, but xrays finally show that it is just
> > extremely tight hip
> > muscles pulling my hip the wrong way. I am in the
> > works to see if a
> > baclofen pump will ease the hip and leg muscles.
> > another disability that
> > looks like cp is dystonia, you might want to read
> > about that.
> >
> > good luck, keep us posted.
> >
> > Mag
> >
> > Tamar Raine
> > [log in to unmask]
> > Now serving tee shirts! and soon to come, Maui
> > posters and other items;
> > www.cafepress.com/tamarmag
> >
> >
> > > [Original Message]
> > > From: Mary Katherine Powers <[log in to unmask]>
> > > To: <[log in to unmask]>
> > > Date: 9/2/2006 6:12:01 PM
> > > Subject: other questions
> > >
> > > Hello,
> > >
> > > I hope you don't mind yet another email. there
> > are a couple of other
> > > odd things I do and I was wondering if anyone can
> > relate:
> > >
> > > a lot of the time, I don't like to have my feet
> > flat on the ground. I
> > > feel a pull that is uncomfortable in my lower
> > legs. so when I'm in
> > > the
> > > bathroom, I usually lean on the floor with the
> > balls of my feet and
> > > sit
> > > with my feet pointed upwards. when I'm sitting at
> > the computer, I
> > > often end up pulling my legs back and curling my
> > toes under, or
> > > sitting
> > > with my lower legs bent so that the balls of my
> > feet touch the floor
> > > and the rest of my feet is up at an angle.
> > sometimes I'll sit with
> > > the
> > > outside of my feet touching the floor, and
> > everything else lifted up.
> > > these things are more comfortable than sitting
> > with my feet flat on
> > > the
> > > floor. I do have flat feet and I wear orthotics
> > for them.
> > >
> > > maybe I've gotten really used to having poor
> > posture and with the
> > > stretching, I'll sit in a more standard position.
> > it pulls too
> > > much on
> > > my legs. I guess the flat feet could account for
> > it?
> > >
> > > I toe-walked for a while as a child and my mother
> > talked to the doctor
> > > about it, but he said a lot of kids do it. But I
> > was told by a PT
> > > that
> > > I was essentially still doing it, because she said
> > something about my
> > > ankles not coming up all the way so I was pushed
> > forward on my
> > > toes. I
> > > don't understand what she meant because I put my
> > heel on the floor.
> > > but she said I'm pushed forward too much, or
> > something like that. she
> > > said I was out of alignment due to bone structure.
> > I'm completely
> > > clueless on that.
> > >
> > > I also walked late - after age 2. I walked on my
> > knees for a year. I
> > > forget whether I said that already.
> > >
> > > can anyone else relate to not wanting to put your
> > feet flat on the
> > > ground? in shoes with the orthotics in them, it
> > is easier. just
> > > in my
> > > bare feet, I don't like it.
> > >
> > > also, when I said I have to fight my legs to walk
> > a lot of the time,
> > > that is how it is. when I try to walk faster, my
> > back stiffens up and
> > > my legs "lock up" if anyone knows what that means.
> > the resistance
> > > gets
> > > harder.
> > >
> > > I know this may all sound very trivial. I'm sorry
> > if I'm offending
> > > anyone by posting these emails - it's just there
> > is really no one to
> > > talk to who understands this stuff, and some of
> > the things I do
> > > seem so
> > > minor that I don't bother mentioning them for fear
> > a doctor will tell
> > > me I'm being ridiculous or oversensitive, or
> > something like that.
> > >
> > > thanks
> > >
> > > Mary Katherine
> > >
> >
>______________________________________________________________________
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