MY INTRODUCTION

[Guest guest]

Kathleen,

WELCOME!

It is so good to hear that you are doing well and I wish you well. I would be

glad to help with your paper.

I live in Delaware and did not know by your introduction if you still do.

Whether you do or not, I would still love to talk to you.

R

[Guest guest]

Hi Kathleen-

I'm 27 and I also have a 2 year old (your use of the stroller is very

familiar!). I was diagnosed with CMT this year and as far as I know,

no one in my family has CMT. Only my legs are affected right now, my

left more so than my right. Knowing I have CMT also explains for me

why I've never been able to iceskate or run as fast etc.

Best of luck in college! Amie

> Hello out there. I just got a computer. I'm going back to college

and have to write a paper on a subject I know well. So, that would be

CMT. Wish me luck!

>

> I have had CMT all of my life, but didn't realize why I could never

make it to first base in grade school kickball or why I was always the

last one to get to class in high school until I was about 17 and my

parents took me to DuPont in Delaware. We figured out I had CMT.

>

> My Dad and brother have CMT as well. My case seems to pretty mild

compared to others'. I am 28 now and have CMT in my legs. I get

around fine. I used to use braces sometimes if I went to the food

store or the mall, but I don't anymore. I have a son now and he's 2.

I am usually pushing him in his stroller wherever we go, so I just use

that to hold onto.

>

> Well, that's a short story about me. I would love to be in touch

with anyone who would like to share their story or if anyone has any

questions.

>

> Kathleen Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

>

>

>

[Guest guest]

Hi!

I just joined , excited to know that there are other people out

there with similar problems to me. I am a sixteen year old girl who is

believed to have CMT type II. Since there is not yet a test for this,

they do not know for sure, but this is where my all of my tests have put

me. I have sensory and motor symptoms related to CMT. My feet and hands

often have nerve pain and are also quite weak. I wear AFO's on both of my

feet in order to keep my ankles from collapsing. I am on Quinine for leg

cramps and recently started taking Neurontin for the nerve pain. Lately,

I have been exhausted and now I am going to see my neurologist again. All

of my symptoms seem to be worse at night. Do many of you suffer from the

same things I do? I am hoping to find some people who understand. Each

day, I just do the best I can with the things I have and that's what

keeps me going!!!! That's a bit about my condition. In my free tiem, I

love to sing, talk on the phone and just relax! AND I DO MY BEST TO LET

FIGHT AGAINST CMT! Well, hopefully I will meet some of you!

Marzinski

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[Guest guest]

Welcome to the group, Heidi. I appreciate your reply, I was

wondering if anyone else had been told this by a doc or not. This

makes me have more confidence in my new ortho.

Alan

> > > Hi everyone,

> > > Just a brief history of myself... I am 35 years old (pushing 36

in

> > > the next few weeks...that's dreadful to think of). I had been

told

> > > that some of my cousins and father had CMT and not until I took

a

> > > pretty bad fall in '92 was I " offically " diagnosed with CMT Type

> > 2.

> > > Things remmained rather status quo in my life... learning to

> > > wear " good " shoes and watching where you walk etc... In 1997 I

> > opened

> > > a window and turned my head at the same time and heard a popping

> > > sound and had terrible Left arm pain... not to bore everyone

with

> > all

> > > the medical garbage (and I can say that because by profession I

am

> > in

> > > the medical field!) it took 22 months and 8 doctors (some of

which

> > > were " specialist " ) to figure out I had a ulnar nerve entrapment

> > > (nerve conduction studies did not show an entrapment until after

> > > someone made a diagnosis). I had the surgery in '99 and was

> > feeling

> > > great! No pain, no multiple dose of pain meds, sleeping

great...

> > > Life was GREAT! Of course, it can't be a happily ever after

> > > ending... I fell in an unsanded parking lot walking into work

this

> > > January. By the time I saw a doc. that afternoon I could not

even

> > > turn my head. Once again I went through the system, finally

> > someone

> > > decided perhaps an MRI could shed some light on this pain. C5-6

> > was

> > > herniated in my neck and when I met with the neurosurgeon it

was a

> > > classic herniation and the fact I had a hx of CMT was not an

issue

> > > and everything should be fine. Well I decided that if it were

that

> > > classical and he was so optomistic let us go ahead. 3 days

post op

> > > my fingers began getting numb on both sides (pre op it was just

on

> > > the left) and progressively going up my arms. By 8 weeks post

op I

> > > felt as if I was wearing a thick pair of elbow length gloves.

The

> > > symptoms range from numbness/ pain/ tingling/ burning/

coolness. I

> > > have little to no strength and difficulty with fine motor and

some

> > > gross motor skills (espically being out in the cold). They have

> > done

> > > repeat nerve conduction studies that are showing no changes

from my

> > > previous studies. The doctors in this area do not have much

> > exposure

> > > to CMT patients and my primary care MD is looking into the

Boston

> > > area. My question is... has anyone experienced such a dramatic

> > > change in symptoms after surgery (my legs do not seem any worse

> > then

> > > pre-op? And what is your opinion on Neurontin? I have dosed

> > myself

> > > up to 300 mg BID without any affect that I can say made a

dramatic

> > > change in my symptoms. Any thoughts would be appreciated,

thanks

> > for

> > > listening to my story!

> >

> >

> > Foundation: http://www..org

> >

> >

[Guest guest]

Hello,

I have CMT also and really need an operation on both of my knees, however I am

not a candidate

for this surgery because more nerves might die and muscles deteriorate faster.

So I have

chosen not to have the surgery, I jsut try to know my limitations and use

crutches, knee brace,

or a wheelchair when I feel the need is going to benefit me in the long run.

Conserving energy is most

important to me.

Thanks,

Heidi

atucker2567@... wrote:

> Hi, my name is Alan and I thought I would respond to your surgery

> question. I have CMT and also have a badly herniated lumbar disc.

> My ortho doc said that he would not want to do open back surgery on

> someone with CMT because the nerves and muscles react poorly to the

> shock of surgery and recovery time is longer than for " normal " folks.

>

> Just something to pass along.

> Alan

>

>

> > Hi everyone,

> > Just a brief history of myself... I am 35 years old (pushing 36 in

> > the next few weeks...that's dreadful to think of). I had been told

> > that some of my cousins and father had CMT and not until I took a

> > pretty bad fall in '92 was I " offically " diagnosed with CMT Type

> 2.

> > Things remmained rather status quo in my life... learning to

> > wear " good " shoes and watching where you walk etc... In 1997 I

> opened

> > a window and turned my head at the same time and heard a popping

> > sound and had terrible Left arm pain... not to bore everyone with

> all

> > the medical garbage (and I can say that because by profession I am

> in

> > the medical field!) it took 22 months and 8 doctors (some of which

> > were " specialist " ) to figure out I had a ulnar nerve entrapment

> > (nerve conduction studies did not show an entrapment until after

> > someone made a diagnosis). I had the surgery in '99 and was

> feeling

> > great! No pain, no multiple dose of pain meds, sleeping great...

> > Life was GREAT! Of course, it can't be a happily ever after

> > ending... I fell in an unsanded parking lot walking into work this

> > January. By the time I saw a doc. that afternoon I could not even

> > turn my head. Once again I went through the system, finally

> someone

> > decided perhaps an MRI could shed some light on this pain. C5-6

> was

> > herniated in my neck and when I met with the neurosurgeon it was a

> > classic herniation and the fact I had a hx of CMT was not an issue

> > and everything should be fine. Well I decided that if it were that

> > classical and he was so optomistic let us go ahead. 3 days post op

> > my fingers began getting numb on both sides (pre op it was just on

> > the left) and progressively going up my arms. By 8 weeks post op I

> > felt as if I was wearing a thick pair of elbow length gloves. The

> > symptoms range from numbness/ pain/ tingling/ burning/ coolness. I

> > have little to no strength and difficulty with fine motor and some

> > gross motor skills (espically being out in the cold). They have

> done

> > repeat nerve conduction studies that are showing no changes from my

> > previous studies. The doctors in this area do not have much

> exposure

> > to CMT patients and my primary care MD is looking into the Boston

> > area. My question is... has anyone experienced such a dramatic

> > change in symptoms after surgery (my legs do not seem any worse

> then

> > pre-op? And what is your opinion on Neurontin? I have dosed

> myself

> > up to 300 mg BID without any affect that I can say made a dramatic

> > change in my symptoms. Any thoughts would be appreciated, thanks

> for

> > listening to my story!

>

>

> Foundation: http://www..org

>

>

[Guest guest]

Welcome Ben!

I am a 46 yr old female in Portland OR who has had 2 surgeries

prior to getting customm-fitted AFO's. I am quite sure you would

need a prescription from an MD before an orthotist (orthotics

specialist) would be able to work with you.

Also, my personal opinion, orthopedic surgeons generally may turn to

surgical remedies that may or may not be in your best interest in the

long run. For the same reason, ankle turning, I had a stabilization

surgery that worked pretty well, however, I lost some forward ankle

flexion and the recovery, for me, was quite long. I would first

consult with a physiatrist (a specialist in rehabilitation medicine)

for they tend toward non-surgical methods and should be 'up' on the

latest bracing technology.

I am sure you will learn a lot from all the folks on this list.

Best wishes,

Melody

> Hello everyone, I just joined this week and have enjoyed

> reading the messages, it is good to be able to talk openly about

our

> lives. I was diagnosed with CMT 8 years ago after complaining of

cold

> sensation in my legs. I went through the terrible testing and

fleed

> the room like a scared cat near the end of the tests, I'll never

> forget that day.

> I a 53 year old male living in San Diego, CA. My recent issues

> with CMT are chronic ankle sprains and random falling. This year I

> went through a lot of physical therapy and I still have pain and

> problems with the ankle. The Dr. felt that I should try

> strengthening the leg muscles, and after a couple of weeks with leg

> excersizes I now have strained the knee. I do use arch supports

but

> don't routinely use ankle or knee supports. I think I will have to

> start using them more routinely as I seem to sprain easily. Does

> anyone have an opinion as to whether you can just use ankle and

knee

> supports from the store or whetheryou need to see a orthepeadic

> surgeon or a orthotics specialist. I glad I found and look

> forward to reading my messages. Ben

[Guest guest]

Welcome -

What kind of surgery are you going to be going through?? We have discussions on

this lately - concerning the long recovery periods - did any of the previous

surgeries work out for you??

i have never been " officially " diagnosed, but my mother has all the classic

symptoms including denial. I personally have good days and bad - right now is

not great... but somehow I keep moving (my dog helps a lot! as does mu hubby).

This group is great - welcome again.

Martha in Billerica, MA

CAROLYN CURRELL <carriemichuk@...> wrote: hello

this is my first visit to a chat room. I was

" officially " diagnosed with CMT about a month ago, as

i was under another surgeon who didnt recognise CMT.

I have numerous operations to both my feet over many

years. I am now awaiting surgery in the next 6-9

months, I am awaiting to have a triple arthrodesis,

even though i have lots of surgery i am still very

nervous. I have two small children. My eldest(7) is

showing signs of having CMT. there are many members of

my family (maternal) who have CMT. I have tried to

lead as normal a life as possible, as i find most

people are understanding once you have explained to

them. I hope i havent waffled too much.

__________________________________________________

[Guest guest]

Hi Carolyn,

Welcome to the group, I have been with this group for about a year now and

find it very helpful and reassuring that we are not alone.

Palombo.