Welcome

[Guest guest]

Dear ;

MY NAME IS DENNIS, I AM 65, AND MUCH LIKE YOUR SELF. IN YOUR LETTER, YOU SAY

SOME TERRIBLE THINGS, LIKE MY SISTER DIED FROM THIS DISEASE...WILL YOU EXPLAIN

TO ME HOW ONE DIES FROM HAVING [CMT]? NOW, I HAVE HEARD OF OTHERS HAVING DIED

FROM CMT, BUT NO ONE EXPLAINS HOW DEATH COMES ABOUT, PLEASE FRANK;...GIVE ME

DETAILS. I TOO HAVE PAINS IN MY HANDS AND MY RIGHT FOOT WAS PLACED IN A CROW

WALKER BOOT TO GIVE IT SUPPORT.

FRANK, YOUR IN THE RIGHT PLACE TO LEARN MORE ABOUT CMT, THERE ARE PEOPLE HERE

THAT ARE WELL INFORMED. JUST ASK QUESTIONS, AND YOUR ANSWERS WILL COME. DON'T

BE SHY, BECAUSE WE ALL HAVE IT, OR ARE SOMEONE WHO CARE FOR ONE WHO DOES HAVE

IT.

YOUR CMT FRIEND...DENNIS

[Guest guest]

Welcome ,

I wear an AFO on my left leg and it help me quite a bit. I originally

got it for footdrop, but I needed a replacement when my ankle become

unstable. I didn't notice the change but my orthotist watched my

gait and noticed the ankle problem. I know it is a big step to

acknowledge that an AFO is needed, but mine makes a great deal of

difference in my life. I can dance with my wife again.

--Larry

[Guest guest]

HI ,

I was in big time denial with one of my sons having CMT. Denial is a happy place

it's no wonder we stay there for a while. I really enjoy learning about the new

research and potential treatments that are coming down the pike. I like the

Hope I feel now much better then the denial stage. On most days anyway

J

enny

[Guest guest]

HI, its nice to meet you.

Welcome to the list.

[Guest guest]

Hi ,

It is very nice to meet you. I am sure you will like it here at .

[Guest guest]

,

I am married to an attorney and there is nothing you can do about your

podiatrist. I was misdiagnosed with MS for five years and actually took

injections once a day for three years until another neurologist told me that I

had

CMT. (after more testing and a new set of EMGs)

Believe me I know how frustrated you must be. It just made me so mad that

whenever I questioned his reasons for being convinced I had MS he would shrug

me off.

CMT is certainly not a " walk in the park " but after hearing that I had MS, I

graciously accepted this disease. It sounds like I have a very mild form

like your mother. I cannot even think of wearing high heels and my shoe

selection is limited, but it could be a lot worse.

I think the worst thing about this disease is that when you feel really bad,

you " look " normal to others and they tend to think you complain about

nothing. THAT is most frustrating!

Feel free to write me if you have any further questions. This website is so

helpful!

Karon

[Guest guest]

,

Welcome. I see myself in you 30 years ago, living in New Jersey and diagnosed

with CMT at the same age. I went no where with it, I lived with it and lived all

over. I did rather well and keep doing it. I feel very lucky to find ,

share and learn so much more about me throu so many friends here.

I think you should join your local MDA, and go to their clinic, they

are very helpfull. I feel good to say that I go and volunteer at the

MDA office and I do love it. I cannot give money but I can give my

time to help others.

I know you have lots of questions like all of us here, I hope you get

some answers to help you accept it, live with it and be happy. We are

all here for one another.

Spy

[Guest guest]

:

Welcome, . Get with the closest MDA Clinic, let their Neurologist order

tests, etc. on their MDA Clinic Day. Should save you some money. Going to the

source is best.

A foot doctor is a foot doctor, not a nerve doctor. Nowadays, people aren't

thinking " out of the box " of the normal realm of things to help people as

they're afraid of how " their going to take it " . So, people stay safe and only

offer help in their scheme of things.

If someone took me by the hand and said, let's go and get help, I'd fall out of

my chair. It's usually that you are in charge of your own medical course - seek

all the information you can and be pro-active. Gretchen is a great one to

listen to to keep active and positive.

Donna B. in Texas

[Guest guest]

Hi ,

Some parts of your story seemed like mine - kind of knowing that something was

wrong, not being the fastest runner, struggling to find a sport where I was

picked first (don't ask why but school soccer and field hockey for some reason

worked for me but nothing else did). It is a relief to finally have a name to

put to why we have high arches and ankles that turn and knees that dislocate or

whatever it is that shows up as a manifestation of CMT as each of us are

different.

In I have found a great group to seek positive advice, ask people

questions as many have similar symptoms, to see if I am going crazy with things.

Remember that not everyone is in the same place on the list - some have limited

symptoms, others have pronounced symptoms, not everyone has the same type of

CMT. Don't let the range of discussion topics scare you - the group is just

amazing and although we are not all the same we share the aim of supporting each

other (at least that is what I have found).

In seeking how to manage my own CMT I have taken a whole body approach. I just

recently moved house so the whole body is under some stress now, but in times of

stability (once the building works are done in June I hope that order returns

along with my routines) I have worked with trainers, physiotherapists,

nutritionist and orthotists to get things right for me.

To fine tune my habits so that I am healthy from the inside out, making sure

that I am not adding anything extra to the already interesting mix! I am also

supposed to have a follow up appointment with my neurologist soon, but I live in

the UK now and the system here can be hard, so first I have to re-register with

my general practitioner and then I can enter the doctor game again. I get lots

of great ideas from this list, then cross check them with the people I trust

that I have worked with on my " medical team " - I don't know if they know that

they are a part of my team, and that is the

next lesson - manage your doctors and your medical care carefully, taking

ownership of it all (including medical record copies) so that you know you as

well as they do.

I hope this does not sound too preachy or crazy - but it works for me and this

group is as important as any of the other specialists there are out there.

Ask lots of questions and I look forward to getting to know you in !

All the best,

Donna from London

[Guest guest]

Hello ,

Been there and still doing it. You are right about the neurodoc, they

tend to stop with the Dx. The best real help that I have had is from a

Physiatrist. They are maybe better known as a rehabdoc and are often

found in clinics. They look at the whole body and prescribe helps for the

symptoms. Short of rebuilding nerve pathways, I think this is the best way to an

optimal life for us. He used to say that a Disabled Tag should not be judged on

your condition going into the store, but your condition coming out of the store.

As for the podiatrist, my advice would be to move on as it can't be changed and

he can say that he only did what his training called for. I've tried them twice

over the years with no valid effects from either one. Incidentally, when I was

twelve years old, a renowned child orthopedic surgeon ( Newington Children's

Hospital, CT ) did an operation on my small toes ( removal of the upper

phalanges ) which was a total failure. Eleven years later, I was drafted in

Hartford, CT and appealed to the medical review board. Guess who was the

orthopedist on the board? Needless to say, he would not admit that the operation

was a failure and passed me into the service! I got along okay, but got put up

on malingering charges after four months in the service. So the best advice then

was still just move on with life.

EdM from NH

[Guest guest]

Welcome !

I remember in High school when I was on the freshman football team, whenever we

did sprints, even the big fat linemen could run faster than me. My poor coach,

not only was I slow, but I was small and skinny. He didn't know what to do with

me! You're right its much better at least knowing what is going on. If my

nerves are dying or dead, how come they hurt so much?

It takes more muscle to go up stairs, I can still run up, but why is it so tough

going down? These are only rhetorical questions, no answers needed.

I just started fishing again, on the Cape Cod canal, I have to walk over rocks

carying stuff, sometimes slippery, and oh yeah, it's much tougher walking down

to the water's edge than back up. I just go slow and CAREFUL.

Last year I was fishing and my feet were starting to hurt from standing around

on the rocks and balencing, and in the early morning dim light I suddenly saw

this guy on crutches making his way down over the rocks with a fishing rod. I

thought He must be crazier than me! He even fell once...I felt less sorry for

myself then, I'm just glad for what I CAN do.

Thanks to all (especially Gretchen) for all the info. HEY do you think maybe

court jesters in medevil times had CMT? They probably flunked Knight school, so

they learned to tell jokes. I thought of it because they wore those shoes with

the curled up fronts, so they wouldn't catch the front of their shoes, Maybe

I'll try those, then I won't stumble as much. Actually I find I don't stumble if

I focus on my walking, kind of like a ZEN thing. Excercise, excercise..GOD BLESS

to all.

[Guest guest]

Hi ,

My name is , It is nice to meet you. I hope your daughters' doctor

appointment is uneventful

I have 3 kids with CMT and I have CMT. My son daughter and I have pes-cavus

foot. My other CMT son has flat feet. We all have small feet.

My sons and I have weak hands, my daughter has better hand strength we do. My

sons and I have cold legs. We all have stiff hands in the cold.

We can not walk on our toes or heels.

If I stay warm my pain is not so bad. The more weight I lose the more any pain I

have gets better.

[Guest guest]

Thankyou Gretchen. It helps a great deal to know that others understand what

we are going through. I am sure joining will help me a great deal.

>From: " gfijig " <fijiwigged@...>

>Reply-

>

>Subject: Welcome

>Date: Mon, 05 Jun 2006 16:26:35 -0000

>

>Welcome . Thanks for introducing yourself. Breathing problems can

>happen with CMT at any age and not necessarily with 'severity' of the

>syndrome. I have known several teenagers who have had breathing

>difficulties and found treatment.

>

>We have two great members who are very active here, also in London,

>Donna and Joana. I am hoping when they see this post they will jump in

>and offer more help.

>

>Again, welcome, I hope you find helpful.

>

>~ Gretchen/Founder-Moderator/

>

>

>

>

>

>

_________________________________________________________________

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[Guest guest]

Hello Gretchen and

Thanks for welcoming me. I have been looking at this excellent site and

reading the e-mails for about a month now and have found a lot of useful

information on it.

As I said, I'm not even sure yet if I have CMT - I'm just hoping that when I

go to see the Neurologist he will have heard of it and not think I'm some kind

of hypochondriac!

I also have two sons aged 13 and 11. The eldest has no symptoms at all,

whilst my youngest son has large, very flat feet and 'slaps' them on the ground

when he walks. He doesn't seem to have any problems running around, although he

does trip up rather a lot. He has moderate learning difficulties and I've

always assumed that his strange gait was something to do with this as up until

recently I'd never heard of CMT. Anyway, I'll just have to wait and see what

the Neurologist says.

- I also called my daughter because I have always thought it is

such a lovely name.

gfijig <fijiwigged@...> wrote:

Welcome ,

Thanks for introducing yourself. I was diagnosed in 1962 with CMT and I

too have the 'feet burning " - have had this off and on since I was 7.

It is under control most of the time, but now and then at the oddest

times, it surfaces (like when I am in the pool no less!)

We have a number of members from the UK and I'm sure they will

jump in to say hello.

When you are diagnosed with CMT, and have a confirmation, perhaps then

is a good time for diagnosing your daughter.

I hope you find full of help.

~ Gretchen (Founder-Moderator of )

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Hi ,

Nice to meet you !

Do you know what type of CMT you have?

My Dad was a Pilot in the service

[Guest guest]

Hi ,

I swear sometimes I think I'm reading about myself when I read the posts. I

have EXACTLY the same symtoms and recently the cramping. I wake up in the

middle of the night with calf cramps and have to get up. Extremely painful.

And the past couple of days a pain in my left butt cheek. I need someone to

literally punch it out of my butt. Right in the middle of it. Sometimes it's

the left sometimes the right one. I didn't know this was part of CMT until

recently.

Things are getting worse lately. It also feels like my feet will fall off where

you bend them (the front part of my foot where you

would pick them up). Sometimes I don't even feel like my feet are attached to

the rest of my body. I have near sightedness, but didn't put that with the

CMT?? It makes sense though.

I have to remember not to push myself when I'm having a good day because I pay

for it for the next 3 days. I know I'm going to get weak and it stinks. Like

today, I want to do alot of cleaning, but if I do, I'll feel lousy tomorrow. A

little at a time, but I feel guilty. When he goes to work everyday, and I'm

sitting home, if I don't clean or something.....I feel lazy. He's great though

and understands. I want him to read more of the posts so he knows I'm not the

only one.My e-mail is spoolie4@... if anyone wants to write to me at

home.

Thanks and take care.

[Guest guest]

BRIAN,

Your introduction is inspiring.  I forwarded it to my son (32 years old,

diagnosed with CMT X two years ago) and my husband.  We still look forward to a

dream of hope that he can do things to the best of his ability.

Tessie

[Guest guest]

Hi ,

I am glad you were not hurt in the robbery. I have had panic attacks for years,

oddly enough they have almost stopped now.

[Guest guest]

Dear Mrs Shrinkydink, [];

My name is Dennis, an I can relate to your experinces. Especially the anguish

and fear that you experince at the Pharmacy. My wife worked in a bank, on a

corner where 2 major streets and 1 entrance to the freeway are. While there,

her bank was robbed 5 times. The last robbery was of the most feared kind,

called a 'TAKE DOWN'. That is where all the people in the bank are put into the

vault, and told to lie on the floor. And weapons were clearly visible. when

the police arrived, they had with them their police chaplin, to give counsel to

those desiring it. Also, when the FBI showed up, they to offered counseling

services. They do understand that being robbed is not a comfortable experince,

but the effects can be lessened by talking to a counselor. Yes, it does take

time for it to go away, but the worst part of it is the personal violation you

feel. My sweetheart could not watch TV shows with violance in them, especially

if they showed robberies, after her attacks. And after the 5th, the went into a

different career, she became a Medical Records Clerk.

, I'm the one in our famiy that has the CMT. It has been basically

painless up until 1999, then my world was turned upside down. Pains so bad I

couldn't understand where they were coming from. I was drivng truck, then and

when these shooting pain attacks came I would grip the steering wheel so very

hard, and then kick my right foot against the other side of the cab, trying to

create a pain greater than what I was experincing. My doc to me out of my work,

she said, 'no more driving'. I was 59. Here in Oregon, companies don't hire

you if your that old, so she put me out to pasture, she put me on disability.

I've been dead ever since. What I mean, is that I haven't done any work or acts

of goodness since then. I feel dead. I feel useless. But this website does

alot of good to me and others. HANG IN THERE, THINGS DO IMPROVE AS WE PUSH

FORWORD.

YOUR FRIEND, DENNIS

[Guest guest]

HELLO SUSAN;

I AM DENNIS, FROM BEAVERTON; AS YOU KNOW, IN PORTLAND, THERE ARE MORE DOCS,

THAN CURES. I HOPE YOU HAVE FOUND SOME KNOWLEDGEABLE DOCS. I HAVE FOUND THE

DOC'S AT OSHU, ARE VERY KNOWLEDGEABLE OF CMT. AND I USE THE VA, WHICH LEANS ON

THE OSHU FOR RESIDENT DOCS, AND SPECIALISTS. STILL, I GET GOOD TREATMENT. I AM

66 AND I WEAR 'GUNBOAT' SHOES. I DON'T WALK FAR, I USE A WHEELCHAIR OR THE

ELECTRIC CARTS PROVIDED BY THE STORES. MY DOC WROTE UP MY PRESCRIPTION FOR

DISABILITY, AND IT WAS APPROVED EASILY.

I WAS 59, I'M NOW 66. I DON'T GET OUT MUCH, TO CHURCH AND TO THE STORE, WHEN MY

WIFE TAKES ME,. i GET LOAVES AND FISHES LUNCHES 3 DAYS AWEEK. THEY ONLY COST

ME $2.75 EACH. I GET THE DIABETIC LUNCHES. BUT LIFE MOVES ON AND I'L BE AROUND

FOR ANOTHER 20 OR SO, WHAT EVER GOD HAS IN MIND FOR ME. CONTACT ME VIA PHONE,.

AND I WILL READ TO YOU WHAT SHE PUT ON THE PAPER.

DENNIS BARES

[Guest guest]

Welcome Clare, This is Steph in VA. I'm 29 & was dx'd in 1999 when I was 22. Take care, Stephglokay20022002 <glokay20022002@...> wrote: >> Hi Clare,> > I am new to the group myself. All of the e-mail you receive is so

awesome! The group has helped me so very much.> I also was born in Texas, Pampa up in the panhandle. I moved to Ok. from Amarillo in 1996. I love the lakes here.....so peaceful.> Welcome and best wishes.> Gloria> > > ---------------------------------> Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.>

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[Guest guest]

Welcome to .

I am , I live in California USA. I have CMT and three of my five

children also have it.

It is nice to meet you.

I hope you continue to enjoy the list. Everyone on the list offers so much and

that helps make this a great list. We also have an awesome list moderator and

founder in Gretchen.

[Guest guest]

Hi ,

Funny how guilt can get us at any age for any reason. Like we actually did

something bad to our children on purpose.

I had so much guilt over the CMT. I never blamed my parents and I don't think my

children blame me but I have guilt all the same. Just so you know guilt can be

part of the CMT process:)

[Guest guest]

Hi ,

Welcome to the group. I'm sorry your symptoms are getting worse. I

think that you should give your husband a chance though. My husband

doesn't understand it either, but he knows what it's like to be in

pain and hurt. He actually surprised me one day after work with a

foot spa that he had gone out and bought for me. Your husband may

surprise you if you let him. It's not pity - it's being half of a

couple. I bet those twins are cute! Take care.

[Guest guest]

Welcome to the group, . I liked your email and the way you are dealing

with CMT head on. I am from India, 20, and...well 'too happy go lucky to know

what else to write here'. Hehe...

All I can mention here is that exercising has indeed helped me a lot, too. These

days I am looking for a physiotherapist in my town upon my elder brother

Sameer's suggestion. He, too, has CMT.

That's about it for now

Take care n keep smiling

Reema