My Introduction

[Guest guest]

Hi Juli and WELCOME!

My initial advice, get another opinion!!! Was this a doctor at an MD

clinic? or a smaller town? Most doctors, even in big cities, don't

understand all that can be involved. I grew up in rural Pennsylvania

and it wasn't until I moved to Philadelphia to attend college, that I

met some great doctors at the MDA clinic at The University of

Pennsylvania. In fact, I my doctor, was DR. Fishbeck, wellknown for his

work back then with CMT patients. I don't know about the heart failure,

was it a difficult birth? The chest and rib pain sounds similiar to the

kind of pain I get. I have type III, and onion-bulb neuropathy, so I

experience constant pain - ALL over, when a nerve is enlarged as it

enters a nerve root. My chest pain actually seems to be coming from my

back. Both me and my brother both also have Mitral Valve Prolapse and

his is fairly severe, needing medication.

I'm sorry for all your difficulties, I hated that President's Physical

Fitness Test TOO! And I played varsity softball - I just couldn't run -

when I ran, I ran on my toes and I ended up with the nickname. 'Tippy' -

boy did I hate that

Please go to another doctor, don't stop. You must be the one in control

of your own medical treatment - be your own advocate.

Peace & love

Judy g.

Juli Ochs wrote:

> Hi, I am new. New to the Group but not new to CMT. I

> was diagnosed

> 5 years ago after finding my biological mother (I'm

> adopted). It was

> nice to finally figure out why I suffered with the

> problems that I

> have suffered with all of my life, like trouble

> writing with a pen,

> or forget ever finishing the Presidential Fitness

> Award.

> Lately I have had some trouble I am wondering if

> anyone has ever experienced.

> Last year I had heart failure after I gave birth to my

> daughter.

> Several months later I kept having chest pains, now a

> year and 1/2

> later I am still suffering with chest pains and rib

> pain. Weakness

> and difficulty with stairs and lifting things (i.e.

> little girl).

> I had some blood tests that indicated myositis, but

> after an EMG and

> a muscle biopsy, my neuro said no, even though I

> continue to have an

> enzyme in my blood that is elevated. He has now

> basically dumped me

> because I " don't have anything " .

> Any suggestions? I wonder if the CMT could mask other diseases??Juli

>

> __________________________________________________

>

[Guest guest]

Hi Juli !, I'm glad you asked about a higher than normal enzyme in

your blood because I've been meaning to ask the group the same thing!

A couple of months ago, I had a routine blood test and my M.D. called

me in right away because my creatin kinase level was way higher than

normal (he thought I must have had a heart attack because this enzyme

shows very high right after one). I told him I didn't have a heart

attack, but I had to go through the tests anyway. Well, I researched

this creatin kinase thing, and learned from several sources that

people with neuro muscular deseases often have an elevated level of

this enzyme in their blood. And, the level goes up with the more

exercise you do! Now I have to get a blood test once or twice a month

for the doc to keep his eye on it and I can't have the test if I've

done any strenuous exercising (like yardwork, etc.) within 24 hours

of the test. I think the doc has finally agreed that a higher than

normal reading is " normal " for me! Hope this info helps, and I'd love

to hear if other CMT'ers have a CK level higher than average. BobD

> Hi, I am new. New to the Group but not new to CMT. I

> was diagnosed

> 5 years ago after finding my biological mother (I'm

> adopted). It was

> nice to finally figure out why I suffered with the

> problems that I

> have suffered with all of my life, like trouble

> writing with a pen,

> or forget ever finishing the Presidential Fitness

> Award.

> Lately I have had some trouble I am wondering if

> anyone has ever experienced.

> Last year I had heart failure after I gave birth to my

> daughter.

> Several months later I kept having chest pains, now a

> year and 1/2

> later I am still suffering with chest pains and rib

> pain. Weakness

> and difficulty with stairs and lifting things (i.e.

> little girl).

> I had some blood tests that indicated myositis, but

> after an EMG and

> a muscle biopsy, my neuro said no, even though I

> continue to have an

> enzyme in my blood that is elevated. He has now

> basically dumped me

> because I " don't have anything " .

> Any suggestions? I wonder if the CMT could mask other diseases??

Juli

>

> __________________________________________________

>

[Guest guest]

Hi Sharon,

My name is Judy Garland Piersol (you can find my introduction in the

posts, it wasn't long ago - my 'sender appears as either my name or

email address - stronggirl2@...) Anyway...Welcome, Welcome,

Welcome,

This is a very informative, friendly, and highly regarded site,in my

eyes. Ask questions, and you will surely get an informed answer... I've

been so happy ever since I stumbled across this marvelous group of

people.

Peace & love to you & yours

Judy g.

Jerry Sturdevant wrote:

> Hello to all of you, my name is Sharon. I am 56 yrs. old, I am

> blessed with a wonderful " significant other " in my life, as well as, a

> healthy 33 year old son. I work everyday as the secretary to the

> principal at a small elementary school in rural, upstate NY. Life is

> perfect except for one small flaw, I have CMT.

> At 41 I began to drop my right hip and limp. I experienced

> strange sensations like what I perceived stroke victims would feel.

> When my tests, by a neurologist, were finished, (I found those tests

> to be very uncomfortable), he told me I had CMT, there was no cures or

> medications for it, I might stay the same or end up in a wheel chair,

> and there was not any reason for me to come back. I was horrified! I

> wasn't given any written information, any suggestions of contacts,

> MDA, nothing. I do not know what type I have and needless to say I

> have not been back.

> Well life goes on.......so this many years later I find all of

> you. Until now I have never met or spoken with a single person that

> has CMT. I am so HAPPY to share with all of you!!!

> My day to day life is not to bad. My mind is always on my steps

> and when I am walking in public by myself I use a cane. I sometimes

> think I am to careful and I know I am to conscious of what I look like

> to other people. My movements have gotten worst over the years, my

> hands have started showing the effects of the CMT, but for the most

> part I get about life OK. I do not have any pain, etc. and after

> reading the forums I know I am one of the fortunate ones.

> I do understand the frustrations, fears and embarrassments that we

> all have. I was a strong, athletic person growing up and remained so

> right up until I began feeling the effects of CMT. I have my bad

> days, but I try real hard to keep a positive mental attitude.

> I am looking forward to hearing from all of you. Regards, Sharon

>

>

>

>

>

>

>

[Guest guest]

Hi Sharon,

Welcome to the group. I think you will find lots of good

people, an make a few good friends here. You mentioned being " to

careful " , I think as you grow older you will understand how important

it is to be as careful as possible. You will have to learn when and

how far to go, when you " let your hair down " .

Again welcome to our group, feel free to post or answer posts, you

will learn a lot about CMT and how to deal with it, and a lot about

human nature, and how to avoid some of it..

Again Welcome,

Numbthumb

> Hello to all of you, my name is Sharon. I am 56 yrs. old, I am

blessed with a wonderful " significant other " in my life, as well as, a

healthy 33 year old son. I work everyday as the secretary to the

principal at a small elementary school in rural, upstate NY. Life is

perfect except for one small flaw, I have CMT.

> At 41 I began to drop my right hip and limp. I experienced

strange sensations like what I perceived stroke victims would feel.

When my tests, by a neurologist, were finished, (I found those tests

to be very uncomfortable), he told me I had CMT, there was no cures or

medications for it, I might stay the same or end up in a wheel chair,

and there was not any reason for me to come back. I was horrified! I

wasn't given any written information, any suggestions of contacts,

MDA, nothing. I d

[Guest guest]

Juli,

Hey, Welcome to !

I am so glad that we have another member here to join. You can never have

too many friends and with CMT, you can never share too much info.

I am a 16 year old with CMT type II. I was diagnosed about a year and a

half ago. I wear AFO's and am trying diff. meds for nerve pain. Please

let us, as a CMT group, know if we can answer any questions or help in

any way! Oh, by the way, I can always remember taking Presidential

Fitness Tests....GRRR...I always dreaded them and never won! At that

time, we didn't realize I had CMT, so I always felt stupid. Anyhow...

Once, welcome, and we're glad you're here!

Marzinski

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hi Sharon!

Welcome to ! We're so glad that you've joined us. More friendship

and more information! Let's see, just a quick info bit on me. I am 16

years old and have CMT type II. I was diagnosed about a year and a half

ago. I liked how you said you keep a positive attitude. With CMT, it can

be tough, but attitude plays a lot in how you deal with it!

Once again, welcome, and I hope that this group will help you as much as

it does me!

Marzinski

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

WELCOME CAROLYN!

My name is Judy or also stronggirl2 on the posts. I had triple

arthrodesis on BOTH feet, about a year apart. I had mine done during

college breaks, one was over X-mas break. Because they didn't understand

the whole realm of CMT 17 years ago, they at keast knew my upper body

was weak, so they gave me 'forearm' or 'polio' crutches, because you

can't even 'toe touch' for several weeks so the bone will fuse. Since

you have kids, you might want to rent a wheelchair to get around until

you can put pressure on your foot. I REALLY wish I would have had one, I

was 17 when I had my first one done and I went to Temple University in

Philadelphia and it is a BIG campus. - I did not have an ankle fusion,

and the triple lasted a while. If you need to talk I'm here, as is

everyone else on this site!

keep me /us posted.

peace & love to you & yours.

Judy g.

CAROLYN CURRELL 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]

Hello Carolyn, and WELCOME!

You seem to have a wonderful attitude, CMT is often not only

physically draining but emotionally draining as well. I pray that you

do not have the really debilitating type of CMT, some in our group are

lucky enough to have a reasonably normal life, and can do most of the

things that " normal " people can do, they are capable of doing the fun

things in life. For me personally, tying my shoes laces is a huge

accomplishment, we all do what we can, and thank God we are capable

of doing that. It's amazing what the body is capable of, as you loose

some things you will find other things improving exponentially.

Again welcome to , I'm sure you will find some great people here.

Dave (Numbthumb)

> 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]

Welcome To !

I truly think this is a really great group with a lot

of awesome members.

I am a 16 year old with CMT 2.

If there are any questions we can answer, let us know!

Marzinski

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hi Deanna,

Welcome!!!! Dress shoes, ARGH! that had ALWAYS BEEN A MAJOR PROBLEM.

Instead of finding shoes, I would find outfits that covered my shoes. In

other words, if you can't find comfortable dress shoes, wear comforatble

shoes and HIDE THEM. In fact, for the first time in my life I got to

wear these really cool, kinda trendy, yet dressy shoes to this V.I.P

party. I felt so cool. But I'm in a wheelchair. Oh wow, I'm going to add

that to my wheelchair 'positives' list - I can wear ANY shoes I want.

LOL

Have you ever had foot surgery or do you just have the AFO's? Sometimes,

if you can find a good place that specializes in corrective shoes, you

can take a pair you have found elsewhere and they might be able to adapt

them to your needs. The problem is, they can't have a heel or you'll end

up on your nose ,do to the braces. Good Luck, and keep us posted.

I don't know if this will help, but I wanted to say welcome and invite

you to ask questions, join in and learn all you can. This is the best

website!

Peace & Love

Judy g.

deanna leigh wrote:

> Hello

>

> My name is Deanna. I live in Romeo, MI. I am married

> with a 2 year old son and 4 teenage stepsons, 3 of

> them have lived with us since we were married 7 1/2

> years ago. I am not sure when I was diagnosed with

> CMT. I guess I just always knew I had it since my mom

> and her mom and her mom (4 generations) all had it.

> Just this year, I starting wearing leg braces. I

> recently met a gentleman who also has CMT and he told

> me about this web site. I look forward to

> corresponding to other people who almost literaly

> 'have walked in my shoes'. I have alot of questions,

> especially where do women get dress shoes from (if

> they even exist) and ways of dealing with stress. I

> look forward to hearing from others with this

> condition.

>

> Sincerely

> Deanna

>

> __________________________________________________

>

[Guest guest]

Ho Deanna

I'm also in a wheelchair but in everyday life I always wear long skirts or

trousers. No one other that doctors or my husband has seen my legs in years. I

do tend to wear ethnic nype clothes with lots of jewellry etc and say I'm a

writer (which I am) and I get away with it. This is really cheating because CMT

doesn't enter in to it but when I'm asked about my way of dressing I just repy

'I'm an individual darling and somehow get away with it.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

----- Original Message -----

From: Judy Piersol

Sent: Wednesday, December 05, 2001 11:57 PM

Subject: Re: [] My Introduction

Hi Deanna,

Welcome!!!! Dress shoes, ARGH! that had ALWAYS BEEN A MAJOR PROBLEM.

Instead of finding shoes, I would find outfits that covered my shoes. In

other words, if you can't find comfortable dress shoes, wear comforatble

shoes and HIDE THEM. In fact, for the first time in my life I got to

wear these really cool, kinda trendy, yet dressy shoes to this V.I.P

party. I felt so cool. But I'm in a wheelchair. Oh wow, I'm going to add

that to my wheelchair 'positives' list - I can wear ANY shoes I want.

LOL

Have you ever had foot surgery or do you just have the AFO's? Sometimes,

if you can find a good place that specializes in corrective shoes, you

can take a pair you have found elsewhere and they might be able to adapt

them to your needs. The problem is, they can't have a heel or you'll end

up on your nose ,do to the braces. Good Luck, and keep us posted.

I don't know if this will help, but I wanted to say welcome and invite

you to ask questions, join in and learn all you can. This is the best

website!

Peace & Love

Judy g.

deanna leigh wrote:

> Hello

>

> My name is Deanna. I live in Romeo, MI. I am married

> with a 2 year old son and 4 teenage stepsons, 3 of

> them have lived with us since we were married 7 1/2

> years ago. I am not sure when I was diagnosed with

> CMT. I guess I just always knew I had it since my mom

> and her mom and her mom (4 generations) all had it.

> Just this year, I starting wearing leg braces. I

> recently met a gentleman who also has CMT and he told

> me about this web site. I look forward to

> corresponding to other people who almost literaly

> 'have walked in my shoes'. I have alot of questions,

> especially where do women get dress shoes from (if

> they even exist) and ways of dealing with stress. I

> look forward to hearing from others with this

> condition.

>

> Sincerely

> Deanna

>

> __________________________________________________

>

[Guest guest]

Welcome Deanna!

I also live in Michigan, in Canton which is kind of close to Ann

Arbor....

I am sixteen and have CMT type 2.

welcome to , you'll find out so much and

get many questions answered...I know I have

Marzinski

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Hello group, my nick name is rocky and I have CMT.

I am a male age 37 living in pennsylvania.Get more from the Web. FREE MSN

Explorer download : http://explorer.msn.com

[Guest guest]

--- jim chernega <woodchuck1964@...> wrote:

> Hello group, my nick name is rocky and I have CMT.

> I am a male age 37 living in pennsylvania.Get more

> from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

Rocky; My name is Jim too, but you're younger than I

am! Welcome aboard.

Jim Nash

Ohio

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Hello Jim

Glad to be aboard, so far i'm impressed with the crew!!!!!

jim

----- Original Message -----

From: jim nash

Sent: Wednesday, January 09, 2002 8:11 PM

Subject: Re: [] My Introduction

--- jim chernega <woodchuck1964@...> wrote:

> Hello group, my nick name is rocky and I have CMT.

> I am a male age 37 living in pennsylvania.Get more

> from the Web. FREE MSN Explorer download :

> http://explorer.msn.com

>

Rocky; My name is Jim too, but you're younger than I

am! Welcome aboard.

Jim Nash

Ohio

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

> Hello! My name is .

**********************************************************************

**********************************************************************

**Welcome

Rocky

Pennsylvania