Introducing myself

[Guest guest]

In a message dated 3/9/00 9:01:18 PM Pacific Standard Time,

bilmiller@... writes:

<< Hello there,

This is Joanie in the Mojave Desert in Calif. >>

HI Neighbor, I live in Lancaster CA.

[Guest guest]

Hi Joanie!

I am 41, mom to 3 and also have CMT2. Very strong history of CMT - it has

been diagnosed in my family for over 50 years.

But more importantly...........

I am a sewer whose specialty is quilts!!!!! I use a machine for all my

quilting - how about you?

We always need to remember what is most important in our lives.

It's certainly not the CMT.

A quilter at heart,

Ruth Warren

>

>I volunteer as a teacher for ESL (English as a second language). And my

>real love is quilting!!!!!!!!!

>

______________________________________________________

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[Guest guest]

Hi Ruth,

Really glad to hear from you. Not only CMT 2 but even more

important...............a fellow quilter!!! I do almost all my work on the

machine. I have a Bernina that I love. I would like to know more about

you.

Joanie here, from the Mojave Desert

Re: Introducing myself

>

>

>

> Hi Joanie!

>

> I am 41, mom to 3 and also have CMT2. Very strong history of CMT - it has

> been diagnosed in my family for over 50 years.

>

> But more importantly...........

> I am a sewer whose specialty is quilts!!!!! I use a machine for all my

> quilting - how about you?

>

> We always need to remember what is most important in our lives.

> It's certainly not the CMT.

>

> A quilter at heart,

> Ruth Warren

>

>

>

>

> >

>

> >I volunteer as a teacher for ESL (English as a second language). And my

> >real love is quilting!!!!!!!!!

> >

>

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

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>

[Guest guest]

Hi There, Joanie here,

I go through Lancaster everytime I go to Burbank to see my sister. I have

lived in Ridgecrest for 50 years ( spent the first 25 on the navy base).

Boy , has Lancaster changed over the years!!!

Re: Introducing myself

> From: jacee17@...

>

> In a message dated 3/9/00 9:01:18 PM Pacific Standard Time,

> bilmiller@... writes:

>

> << Hello there,

> This is Joanie in the Mojave Desert in Calif. >>

> HI Neighbor, I live in Lancaster CA.

>

>

>

> ------------------------------------------------------------------------

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click.egroups.com/1/975/5/_/616793/_/952666754/

> ------------------------------------------------------------------------

>

>

[Guest guest]

In a message dated 3/15/00 7:20:10 PM Pacific Standard Time,

bilmiller@... writes:

<< Hi There, Joanie here,

I go through Lancaster everytime I go to Burbank to see my sister. I have

lived in Ridgecrest for 50 years ( spent the first 25 on the navy base).

Boy , has Lancaster changed over the years!!! >>

I think she means Lancaster PA.

I got happy for a min thinking someone else lived in lacaster with CMT that

was on the list. Then I remembered it was PA.

jenny

[Guest guest]

You are right it is Lancaster, PA. I never realized there were two

Lancaster's until I talked to you last summer .

Betty

[Guest guest]

You are right it is Lancaster, PA. I never realized there were two

Lancaster's until I talked to you last summer .

Betty

[Guest guest]

You are right it is Lancaster, PA. I never realized there were two

Lancaster's until I talked to you last summer .

Betty

[Guest guest]

> You are right it is Lancaster, PA. I never realized there were two

> Lancaster's until I talked to you last summer .

Betty, hello from land! I'm just south of Baltimore, and we love to

go to the Lancaster PA area on vacation. Our family has been there and

Hershey many times over the years. My Mother's side of the family is from

Gettysburg, and I have many fond memories of my Grandpa's farm outside

G-burg. If I ever get the chance I'd like to make PA my home rather than

MD.

[Guest guest]

> You are right it is Lancaster, PA. I never realized there were two

> Lancaster's until I talked to you last summer .

Betty, hello from land! I'm just south of Baltimore, and we love to

go to the Lancaster PA area on vacation. Our family has been there and

Hershey many times over the years. My Mother's side of the family is from

Gettysburg, and I have many fond memories of my Grandpa's farm outside

G-burg. If I ever get the chance I'd like to make PA my home rather than

MD.

[Guest guest]

> You are right it is Lancaster, PA. I never realized there were two

> Lancaster's until I talked to you last summer .

Betty, hello from land! I'm just south of Baltimore, and we love to

go to the Lancaster PA area on vacation. Our family has been there and

Hershey many times over the years. My Mother's side of the family is from

Gettysburg, and I have many fond memories of my Grandpa's farm outside

G-burg. If I ever get the chance I'd like to make PA my home rather than

MD.

[Guest guest]

<< Happyness has saved me!! And i'm not frivolous, I say it with too much

respect. Being positive is the best thing can anyone do. And my story is

beautiful and happy, isn't it? Or at least i think or i have made so. >>

Hello Bruno, and welcome.

You write very well in English.

Yes, a positive attitude can help us very much. We are all different, so the

exercise will help some people, but not others. Being young can help, too.

Your zest for living will help you have a good life.

Very best wishes in your education and other goals.

Write any time you have questions or comments for the group.

Kat in Seattle, Washington, USA

[Guest guest]

<< Happyness has saved me!! And i'm not frivolous, I say it with too much

respect. Being positive is the best thing can anyone do. And my story is

beautiful and happy, isn't it? Or at least i think or i have made so. >>

Hello Bruno, and welcome.

You write very well in English.

Yes, a positive attitude can help us very much. We are all different, so the

exercise will help some people, but not others. Being young can help, too.

Your zest for living will help you have a good life.

Very best wishes in your education and other goals.

Write any time you have questions or comments for the group.

Kat in Seattle, Washington, USA

[Guest guest]

Dear Bruno, Welcome to our chat. I think your english is wonderful. I think

your letter is wonderful. It is letters like yours that keep our spirits raised.

Please keep in touch, we want to know how you are doing.

Bruno Palacios Serra bpalacios@...> wrote:

Hello! First of all I want to say that I'm spanish (Spain, Europe) and I don't

speak an excelent english, so forgive me for my probably simple-writing mails.

I'm 18 years old and i have some strange story with CMT, because doctors don't

know certainly if i had it or not. When i was 6 years old my parents brought me

to the hospital because i get slimmer in a very short time and i had muscle

debility problems, loss of balance and those things were more appreciable in the

right side of my body. I went to hospital a lot of times those years, and after

a lot of medical tests (blood ones, x-rays) the doctors arrived to a conlcusion:

I had the CMT deafness. But they want to make me a biopsy to confirm their

diagnose. My father didn't let they make it, because i was set up after all that

time going to hospital.

I started by my parents desire to do some exercise, and one year later we knew

one doctor who said that with a lot of especific exercise and adequated

food-supplies i had possibilities of recovering. He was in truth. In 11 years i

have improved a lot. I can say that most of people i know don't know i have this

problem, they think that i'm only a very thin person that walks in a strange

way. Certainly i am, but i have recovered most of the muscle moves i had lost

and i can do quite a normal life. I learned to write with my left hand, well i

did all with my left hand, now i do thins again with my right one but writing,

that requires more motricity. So i can study at the university (I study

telecomunication engineering) slightly as a normal person.

Wow! I have written too much. Well i'm finishing. i think that (except medical

assistance failed, they now don't know if i had cmt, they treat me as an

exceptional patient, because they don't understantd that i had improved these

years, the expect that i would gone worse) all is important in cmt but the most

important thing is willpower of self-superation (i don't know if i expressed it

correctly) and being happy. Happyness has saved me!! And i'm not frivolous, I

say it with too much respect. Being positive is the best thing can anyone do.

And my story is beautiful and happy, isn't it? Or at least i think or i have

made so.

Thank you.

Bruno Palacios

[Guest guest]

Hi Kate, My name is Kathy and I was diagnosed with CMT at the age of 17, I'm

now 51. My parents had a hard time excepting that something was wrong with

me - so they never explain to me what I really had. I wore afo's in my JR.

year of high school, but rebelled and refused to wear them (until I turned

25). I got married while I was in my senior year of high school and was

young when I had our first two children. During my first two pregnancies I

really didn't notice a big change in my physical health and I had natural

deliveries with both pregnancies. My husband (at that time)had a hard time

dealing with the fact that I had CMT, and eventually we got divorced. I'm

remarried (almost 30 yrs. now)to a wonderful man and we decided to have a

child and I did notice that I tired easier and my CMT progressed with the

third pregnancy, I was 28 when he was born. But I would not change a thing

as far as having my children, for me it was worth it. I wear AFO's and I'm

still very active with my family and grandkid too. Like you, I know what I

can do and my limitations. As far as seeing the Doctors, I usually go for a

yearly check up and see if I can help educate them!!! CMT is different for

each one of us. The pain I feel may or may not be the same for the next

person. So I try to help with any data I can supply. I look at having CMT as

an inconvience more than anything - I usually don't let it get me down.

Stay as active as much as you can. Matter of fact, we are moving to Mexico

in September to be missionaries. Take care, Kathy R.

>From: Liligirl20@...

>Reply-To: CMTUS (AT) e

>To: CMTUS (AT) e

>Subject: Introducing myself

>Date: Sat, 29 Jul 2000 01:07:09 EDT

>

>Hello All!

>My name is Kate Lair and I am 22 years old. I live in Rochester, MN, am

>the

>youngest of fours girls who all have CMT. We were all diagnosed as

>children

>( we were actually a part of Dr. Dyck's study that found the gene, or

>genetic

>link, or something). I had an EMG done when I was four and basically, have

>not had much contact with physicians since then (until I was 17... but more

>on that in a moment). I don't exactly know what level to describe my CMT.

>In my family, I have one of the worst cases, my oldest sister and I have

>been

>most affected, the two in the middle have barely any signs, however, I

>would

>guess that in comparison to others with CMT I probably have a relatively

>mild

>case. I do not wear any kind of afos or require any assistance walking.

>My

>balance is poor, I have problems with fatigue (but whether that is due to

>CMT, hypothyroidism, or simply trying to do too much, I don't know), I

>can't

>run and there are periods where I fall down a lot. But for the most part I

>am ok. I usually describe my disease to people as somethings that is

>annoying more than anything else.

>

>Anyway, my father is a pedorthist so he knows the proper excercises to do

>for

>CMT (stretching heel cords, etc) and has made me afos (which I don't wear).

>I have always known that I have the disease but never knew much about it

>until I spoke with a Neurologist at the Cleveland CLinic when I was 20 and

>got a little patient education. It took me a while to finally decide to

>seek

>out my own information after having been told by my father that I was going

>to end up in a wheel chair unless I did what he said (according to two

>separate neurologists, this information is most likely incorrect).

>

>CMT is a part of my life and has been for as long as I can remember, but

>like

>I said, it isn't a debilitating disease for me (at least not yet). I just

>recently found the CMTA website and have been doing a lot more reading

>about

>it. I think I have done a good job of accepting my limitations but not

>allowing them to limit me, if that makes any sense. I know very well what

>my

>body can do and what it can't, and while I at times am frustrated, for the

>most part, I am just me!!

>

>Although I have what is probably a mild case of CMT, I do know what it is

>like to be disabled. When I was 17 I had my wisdom teeth pulled and the

>anesthetic sent me into cardiac and respiratory arrest (I never really got

>a

>straight answer as to whether my reaction to the anestheic has anything to

>do

>with CMT or not). As a result I was on a respirator for 2 and a half weeks

>in a medically induced coma and paralyzed. THere were many complications

>but

>eventually I pulled through. THe only problem was that I was lying flat on

>my back for three whole weeks and lost all muscle strength. WHen I woke up

>in ICU I could barely sit up let alone stand or walk. I worked my way from

>the bed to the wheel chair to the walker to the cane to finally nothing,

>but

>it took three months of physical therapy to undue three weeks of damage!!

>

>I graduated from college this past december with a degree in sociology and

>american culture studies and am currently working for a company that runs a

>series of group homes for the mentally retarded, eventually I plan to go to

>graduate school for sociology.

>

>After graduating from school I moved back to Rochester (where I am

>orginally

>from) and saw a neurologist this past spring just to sort of check in

>(because it had been a while). Because the Mayo clinic is Oh-so-organized,

>the blood tests that I had done when I was four were lost and the

>neurologist

>I saw was thinking that the original diagnosis may have been incorrect

>(based

>on the EMG from when I was 4, because there was already so much nerve

>damage

>at such a young age). She ordered another EMG and another blood test. I

>had

>the EMG done but have not had time to go in for the blood test and am

>pretty

>sure that the second EMG was unnecessary and a waste of my time. Doctors

>can

>be such a pain sometimes!

>

>Well, that's just a simple introduction to me, I am looking forward to

>hearing from people. I am especially curious to hear from women with CMT

>who

>have had or plan to have children. Although I am not planning a family

>right

>now, I would like to have one someday and would like to know what to expect

>in terms of carrying a child. Also, would like to know how often people go

>to

>their neurologists. The one I saw in the spring suggested I come in about

>once a year just for checking in, but I am wondering if that is really

>necessary. Don't want to make any unneccesary trips to the doctor, I have

>seen enough of the inside of hospitals for one lifetime!!

>

>Thanks for your time and I look forward to hearing from you!

>Kate

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

In a message dated 7/28/2000 10:08:14 PM Pacific Daylight Time,

Liligirl20@... writes:

<< Although I am not planning a family right

now, I would like to have one someday and would like to know what to expect

in terms of carrying a child. Also, would like to know how often people go

to

their neurologists. The one I saw in the spring suggested I come in about

once a year just for checking in, but I am wondering if that is really

necessary. Don't want to make any unneccesary trips to the doctor, I have

seen enough of the inside of hospitals for one lifetime!!

Thanks for your time and I look forward to hearing from you!

Kate >>

HI Kate, I have had 5 babies. Not anything unusual during pregnancy other

then I got really heavy the last month and didn't do much walking when I was

gaining weight. I never see a Dr. Why bother unless you have a problem. They

depress me.

[Guest guest]

You sound like a very wise person! Welcome to the group!

RE the cardiac arrest - a cousin of mine had the same thing happen

(she doesn't have CMT and is not a part of the bloodline that does)

but it was determined that it was the Sodium Pentathol that did it.

She also is fine now.

RE doctors - I don't see them a lot either. But I have to qualify

that be saying that sometimes I wait too long, because (1) I have a

really high pain threshold and that's a mixed blessing - I don't know

I'm in pain until it's pretty advanced, and (2) I'm hard headed!

Regards,

Carolyn

> Hello All!

> My name is Kate Lair and I am 22 years old. I live in Rochester,

MN, am the

> youngest of fours girls who all have CMT. We were all diagnosed as

children

> ( we were actually a part of Dr. Dyck's study that found the gene,

or genetic

> link, or something). I had an EMG done when I was four and

basically, have

> not had much contact with physicians since then (until I was 17...

but more

> on that in a moment). I don't exactly know what level to describe

my CMT.

> In my family, I have one of the worst cases, my oldest sister and I

have been

> most affected, the two in the middle have barely any signs,

however, I would

> guess that in comparison to others with CMT I probably have a

relatively mild

> case. I do not wear any kind of afos or require any assistance

walking. My

> balance is poor, I have problems with fatigue (but whether that is

due to

> CMT, hypothyroidism, or simply trying to do too much, I don't

know), I can't

> run and there are periods where I fall down a lot. But for the

most part I

> am ok. I usually describe my disease to people as somethings that

is

> annoying more than anything else.

>

> Anyway, my father is a pedorthist so he knows the proper excercises

to do for

> CMT (stretching heel cords, etc) and has made me afos (which I

don't wear).

> I have always known that I have the disease but never knew much

about it

> until I spoke with a Neurologist at the Cleveland CLinic when I was

20 and

> got a little patient education. It took me a while to finally

decide to seek

> out my own information after having been told by my father that I

was going

> to end up in a wheel chair unless I did what he said (according to

two

> separate neurologists, this information is most likely incorrect).

>

> CMT is a part of my life and has been for as long as I can

remember, but like

> I said, it isn't a debilitating disease for me (at least not yet).

I just

> recently found the CMTA website and have been doing a lot more

reading about

> it. I think I have done a good job of accepting my limitations but

not

> allowing them to limit me, if that makes any sense. I know very

well what my

> body can do and what it can't, and while I at times am frustrated,

for the

> most part, I am just me!!

>

> Although I have what is probably a mild case of CMT, I do know what

it is

> like to be disabled. When I was 17 I had my wisdom teeth pulled

and the

> anesthetic sent me into cardiac and respiratory arrest (I never

really got a

> straight answer as to whether my reaction to the anestheic has

anything to do

> with CMT or not). As a result I was on a respirator for 2 and a

half weeks

> in a medically induced coma and paralyzed. THere were many

complications but

> eventually I pulled through. THe only problem was that I was lying

flat on

> my back for three whole weeks and lost all muscle strength. WHen I

woke up

> in ICU I could barely sit up let alone stand or walk. I worked my

way from

> the bed to the wheel chair to the walker to the cane to finally

nothing, but

> it took three months of physical therapy to undue three weeks of

damage!!

>

> I graduated from college this past december with a degree in

sociology and

> american culture studies and am currently working for a company

that runs a

> series of group homes for the mentally retarded, eventually I plan

to go to

> graduate school for sociology.

>

> After graduating from school I moved back to Rochester (where I am

orginally

> from) and saw a neurologist this past spring just to sort of check

in

> (because it had been a while). Because the Mayo clinic is Oh-so-

organized,

> the blood tests that I had done when I was four were lost and the

neurologist

> I saw was thinking that the original diagnosis may have been

incorrect (based

> on the EMG from when I was 4, because there was already so much

nerve damage

> at such a young age). She ordered another EMG and another blood

test. I had

> the EMG done but have not had time to go in for the blood test and

am pretty

> sure that the second EMG was unnecessary and a waste of my time.

Doctors can

> be such a pain sometimes!

>

> Well, that's just a simple introduction to me, I am looking forward

to

> hearing from people. I am especially curious to hear from women

with CMT who

> have had or plan to have children. Although I am not planning a

family right

> now, I would like to have one someday and would like to know what

to expect

> in terms of carrying a child. Also, would like to know how often

people go to

> their neurologists. The one I saw in the spring suggested I come

in about

> once a year just for checking in, but I am wondering if that is

really

> necessary. Don't want to make any unneccesary trips to the doctor,

I have

> seen enough of the inside of hospitals for one lifetime!!

>

> Thanks for your time and I look forward to hearing from you!

> Kate

[Guest guest]

I wonder if a high threshold to pain is part of the CMT. I also have a very

high threshold. Could it be our nervous system is not as sensitive as others.

E

[Guest guest]

I wonder if a high threshold to pain is part of the CMT. I also have a very

high threshold. Could it be our nervous system is not as sensitive as others.

E

[Guest guest]

Or , could it just because we're so used to pain.

Sue

Re: Re: Introducing myself

I wonder if a high threshold to pain is part of the CMT. I also have a very

high threshold. Could it be our nervous system is not as sensitive as others.

E

------------------------------------------------------------------------------

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[Guest guest]

> I wonder if a high threshold to pain is part of the CMT. I also have a

very

> high threshold. Could it be our nervous system is not as sensitive as

others.

> E

I have a low threshold to pain and have CMT too, so I don't think that's

the case...

Jim

[Guest guest]

My experience is ... Pain hurts.

[Guest guest]

In a message dated 7/30/00 8:10:35 AM Eastern Daylight Time,

hordermason@... writes:

<< Or , could it just because we're so used to pain.

Sue >>

Hello the House,

Hi Sue, your probable right, I'm not cognizant of pain till I hear

others mention it and then I realize I have had the same thing. This might

sound a little metaphysical to you, but it almost seems like there is

something in my body controlling where then next ache is going to be. I will

ache in spots that there seems no reason to be aching there. It comes and

goes, but its not intolerable. Crazy eh.

E

[Guest guest]

Dear

At least with all this happening we can never be classed as boringly

predictable can we?

Sue

Re: Re: Introducing myself

In a message dated 7/30/00 8:10:35 AM Eastern Daylight Time,

hordermason@... writes:

<< Or , could it just because we're so used to pain.

Sue >>

Hello the House,

Hi Sue, your probable right, I'm not cognizant of pain till I hear

others mention it and then I realize I have had the same thing. This might

sound a little metaphysical to you, but it almost seems like there is

something in my body controlling where then next ache is going to be. I will

ache in spots that there seems no reason to be aching there. It comes and

goes, but its not intolerable. Crazy eh.

E

------------------------------------------------------------------------------

------------------------------------------------------------------------------

[Guest guest]

Dear

At least with all this happening we can never be classed as boringly

predictable can we?

Sue

Re: Re: Introducing myself

In a message dated 7/30/00 8:10:35 AM Eastern Daylight Time,

hordermason@... writes:

<< Or , could it just because we're so used to pain.

Sue >>

Hello the House,

Hi Sue, your probable right, I'm not cognizant of pain till I hear

others mention it and then I realize I have had the same thing. This might

sound a little metaphysical to you, but it almost seems like there is

something in my body controlling where then next ache is going to be. I will

ache in spots that there seems no reason to be aching there. It comes and

goes, but its not intolerable. Crazy eh.

E

------------------------------------------------------------------------------

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