(Note: Information on the pages of this web site should not be considered medical opinion(s).
Always consult your doctor before trying any treatment or medication.)...
I have an inherited disease (See update, below--ed).
The name of the disease is Charcot-Marie-Tooth. Just the name is hard to
explain... So from now on I will refer to it as CMT. It was diagnosed in January
of 1989.
Charcot and Marie were doctors in France in the late 1800s.
Their counterpart in England was Tooth. All three determined that certain
symptoms lead to the same condition. Therefore, The three names; Charcot, Marie,
and Tooth. By definition it is a degenerative nerve disease that affects the
peripheral nerves. The deterioration of the nerves then causes the muscles to
waste away. It is most common in the feet and legs, but it can also be in the
hands. It is usually diagnosed in a person's early twenties. The patient usually
has trouble with balance, gait, and most have pain.
Now one hundred years
later, most doctors are just learning about it again. Most of the reference
books I checked didn't even acknowledge it. Later after my doctor realized I was
not satisified with the small amount of information I had been given and was
determined to learn more, told me to look for peripheral
neuropathy.
Finally I found a medical reference that not only listed it
but had three paragraphs about it. From this information I learned that the
primary cause is diabetes. The secondary cause is alchoholism. The third is
hereditary. Since the first two did not fit me, my doctor decided it must be
hereditary.
Because of circumstances beyond my control, I was estranged
from my mother's family. In the last few years since I've been diagnosed, I have
heard my mother or my aunts talk about their "bad" foot or leg. As far as I
know, none of them have had it diagnosed. By the same token, I have not found
anyone in my dad's family with foot abnormalities.
Because of the wasting
away of nerves and muscles, my feet have drawn up in bunches at the ankle
junctions. This causes me to have very high arches and hammertoes. Ask anyone
with one hammertoe how uncomfortable it is. Then multiply by ten!
The
part I hate most is losing my balance. When I'm standing, if I close my eyes, I
do not know where my body is in relation to the rest of the world around me.
Sometimes, with my eyes open, I have to look at my feet to be sure where they
are.
I sometimes have the sensation of stepping into a hole when no hole
is there. Or I will feel as though something has moved under my foot, like
stepping on a ball. Once when I was quite young, I thought I had stepped on a
crawling snake. My elders laughted at me of course.
One of the problems
that seems to be universal with any kind of neuropathy is finding shoes. Pointed
toe heels just don't get it. Not only do I need flat shoes, they also should be
snug fitting and stable enough not to tilt.
The others in our new
Neuropathy Support group talk about constant pain. So far, mine gives me some
discomfort but nothing an asprin won't take care of unless it's cold and raining
too. I do try not to get cold suddenly. That seems to freeze my legs as in they
won't move!
My case is not as pronounced as is the case of the only other
person I have met with CMT. She has a number of other diseases also. She uses a
walker or a wheel chair. She also says she's in pain all the time.
But as
the doctors will tell you, each case is different.
Did you notice I said
"the only other person I have met with CMT." We are a rare breed.
She
also says the doctor diagnosed the CMT but did not tell her what she could do
about it . However they did refer her to the Internet. My doctor did much the
same thing. with the exception of the referral to the Internet. The Internet was
once used by doctors and students and the military. Now it is almost a household
word. (By the way there are reams of information there).
I have enough
weakness in my legs that it is hard for me to get up and down. I feel like Carol
Burnett and Tim Conway trying to get out of the front porch rockers. If at first
you don't suceed, try, try, try again.
My feet and hands are always cold.
They have been ever since I can remember. I have always been accused of my feet
feeling like a block of ice. I don't feel the coldness, but I do look for cover
or even hot water to warm them up.
As I get older, I do notice the cold
more and more. Even air conditioners seem to bother me. But like my husband
says, he can always put on enough clothes to be warm. In summer he can't take
off enough to be cool. So, I put on enough to be warm even in the
summer.
Another thing that gives me problems is night covers. I need to
leave enough wiggle room for my toes. They hurt if the bed covers are too tight
for them. I always wear socks to bed.
That reminds me of house shoes. I
have not yet found a pair that I can use. Most have heels, even little ones. And
they are usually slip-ons. My high arches (classic CMT symptom) will not allow
me to keep them on my feet. They look just fine, but in reality, they come off
my feet as I "walk".
I take two medicines, Neurontin and Nortripilene and
over the counter B-complex vitamins. Cautions on both state that they cause dry
mouth. Therefore I called this my "hoof and mouth diease."
I feel clumsy
most of the time now. When we were younger, my husband and I square danced for
years. I don't remember being a klutz then but I do remember holding on to the
other people in the square. They just thought I was very friendly, now I know it
was to keep my balance! Of everything "we used to do," I miss square dancing the
most.
On October 27, 1992, I broke my right hip. My husband and I were
walking in the carpeted hall of a hospital. Suddenly, I was on the floor. For
about three days I was not aware of the happenings around me. I spent 31 days in
the hospital and rehab hospital. I think the hip problems add to my CMT
problems. Or maybe my CMT problems added to my hip problems!
Between the
two, I use a cane most of the time now. I can get through the day without it.
When I choose not to use it, I feel very tired by the evening.
I use my
quad cane. A quad cane is the one with four tiny "feet", but most important for
me, it stands alone. When I was using my single cane, I was always dropping it.
One day, I dropped it right in front of this nice man who picked it up for me of
course. Then he followed me around for a while. I couldn't decide if he was
worried that I might drop it again or that dropping a cane at our age might mean
the same as a handerchief when we were younger.
November 20,
1998
I fell again tonight. I knew I was going to fall as soon as I
realized I'd tried to turn too fast. I caught Jimmy's arm and pushed myself in
such a way to slide down his left side. That way I landed softly seating myself
on the driveway instead of falling backward and hitting my head like I have done
several times before. I'm sure I'll be sore tomorrow.
Nov., 21,
1998
I'm going to have to try the sliding trick more often. I wasn't sore
at all.
That is another one of the normal items I can no longer do. I
can't turn on a dime like before. The cane usually reminds me not to move too
fast.
Since I've had this I've slowed down. My husband says he can't tell
a difference, but I can. One reason is that I have to think for every move. I no
longer have the capacity for moving without planning every step in my mind. When
we learn how to walk we just do it. Now I have to tell each foot to move. I also
have to be sure that my weight shifts with the moving foot.
Well, today I
got new AFOs. AFOs are ankle-foot orthotics, they are plastic devices that fit
along my legs and ankle and run the full length of my foot. They fasten with
Velcro on the calf of the leg. I can put them into any shoe, but refer back to
the paragraph about shoes. At this time, I wear walking shoes with Velcro
closures. My CMT limits my choice of clothes. Can't you picture a Cinderella in
her ball grown wearing a pair of walking shoes and AFOs?
November 2,
1999
I am still using the quad cane. I'm hoping that two AFOs will make
me feel stable enough to leave the cane. Remember it stands alone!
(Note: This update from H Nowlin is dated in October, 2000.)
I found out in late June that I do not have CMT. When I was diagnosed 11
years ago, there was very little we could determine except to go by my symptoms
and the doctor's educated guess. Now a DNA test has been developed. The DNA
test came back negative. You have to have a certain mutation in your blood and
I do not have it.
Knowing now that I do not have an inherited disease takes pressure off my
child and future generations. Other than that I still have the same symptoms. I
wear AFOs on both legs now and use a cane.
After finding out that I do not have CMT, my doctor was able to take me off
Neurontin. I have never experienced pain like most PN'ers. Since I didn't
need the pills, why should I take them?
Since not taking this medicine, several things have happen for the best.
(Everyone who needs it may be affected differently.) I no longer have the
balance problems, I sleep better, and I'm not as jumpy(nervous). Cold
weather might make me go back on the pills but I'm going to enjoy this while I can.
H Nowlin
hnowlin@houston.rr.com
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