Hello

[Guest guest]

Welcome Cindy,

My name is a. I am the mother of a 13yo daughter with CMT. I don't have

an answer to your question since I don't have the disease personally. My

daughter was diagnosed at age 8, wears leg braces below the knees called

AFO's(ankle-foot orthotics) but you'll hear slang AFO's. She is very much

ambulatory but is having some problems with her fingers curling called

" clawing " (I hate that term). but the one thing I have learned is that this

seems to affect everyone a little differently. Good luck with the nerve

conduction studies in July.

a

[Guest guest]

In a message dated 6/1/00 12:55:41 AM Eastern Daylight Time,

mikerobertac@... writes:

<< but is having some problems with her fingers curling called

" clawing " (I hate that term). >>

How about " contracting "

[Guest guest]

In a message dated 6/1/00 12:55:41 AM Eastern Daylight Time,

mikerobertac@... writes:

<< but is having some problems with her fingers curling called

" clawing " (I hate that term). >>

How about " contracting "

[Guest guest]

another phrase I like rather than clawing is " folded " - someone in mgh chat

said that is how he explains his hands!

Elena

[Guest guest]

another phrase I like rather than clawing is " folded " - someone in mgh chat

said that is how he explains his hands!

Elena

[Guest guest]

another phrase I like rather than clawing is " folded " - someone in mgh chat

said that is how he explains his hands!

Elena

[Guest guest]

Hi Kat,

Thank you for responding to my message. I have always been clumsy.

Falling going upstairs and bumping into things. I don't think my

feet are as affected as my upper body. My feet look ok and my calves

look ok. But my arms are very thin, no strength, and numbness and

tingling in my arms and hands. I know what you mean about the

symptoms being similiar. That is why I am going to be tested to see

what it is that I have. I have good range of motion but no stamna.

I tried cardiokickboxing for a while, but had a hard time keeping

up. My body would get tired after a short time. I guess I think I

have it because my brother just found out he had it and we have

similiar symptoms. I never gave it much thought before he was

diagnosed. But always wondered why the people in my fibro support

group were stiffening up and I was not. I wondered why I had the

range of motion they did not have. Actually I wondered why they were

making a big fuss about nothing. I didn't seem to be as bad as they

were. I know that is terrible to say because their pain is real. I

just didn't feel that I fit in that group but didn't have any other

ideas.

Thank you for your support.

Cindy

> Hi Cindy,

> Nice to meet you.

>

> In a message dated 5/31/00 4:33:05 PM, cindy2055@c... writes:

>

> << There is degeneration and worsening of symptoms. So, will I be

able to

> continue what I have been doing (when I thought I had fibro) with

CMT??? >>

>

> It may depend on what you have been doing!!

>

> CMTers are not necessarily affected a lot. Some are and some are

not. CMT is

> called progressive, but the rate is different with each of us. For

some it

> continues to be mild all one's life. There is NO way to predict,

and if

> anyone does there is no reason to believe what is said.

>

> Are your feet " funny? " Do you have trouble walking without tripping

or

> falling? What do your calves look like?

> How are your hands?

> Why do you think you may have CMT instead of FM?

>

> CMT and fibromyalgia do have some symptoms in common.

>

> Kat in Seattle

[Guest guest]

Hi Kat,

Thank you for responding to my message. I have always been clumsy.

Falling going upstairs and bumping into things. I don't think my

feet are as affected as my upper body. My feet look ok and my calves

look ok. But my arms are very thin, no strength, and numbness and

tingling in my arms and hands. I know what you mean about the

symptoms being similiar. That is why I am going to be tested to see

what it is that I have. I have good range of motion but no stamna.

I tried cardiokickboxing for a while, but had a hard time keeping

up. My body would get tired after a short time. I guess I think I

have it because my brother just found out he had it and we have

similiar symptoms. I never gave it much thought before he was

diagnosed. But always wondered why the people in my fibro support

group were stiffening up and I was not. I wondered why I had the

range of motion they did not have. Actually I wondered why they were

making a big fuss about nothing. I didn't seem to be as bad as they

were. I know that is terrible to say because their pain is real. I

just didn't feel that I fit in that group but didn't have any other

ideas.

Thank you for your support.

Cindy

> Hi Cindy,

> Nice to meet you.

>

> In a message dated 5/31/00 4:33:05 PM, cindy2055@c... writes:

>

> << There is degeneration and worsening of symptoms. So, will I be

able to

> continue what I have been doing (when I thought I had fibro) with

CMT??? >>

>

> It may depend on what you have been doing!!

>

> CMTers are not necessarily affected a lot. Some are and some are

not. CMT is

> called progressive, but the rate is different with each of us. For

some it

> continues to be mild all one's life. There is NO way to predict,

and if

> anyone does there is no reason to believe what is said.

>

> Are your feet " funny? " Do you have trouble walking without tripping

or

> falling? What do your calves look like?

> How are your hands?

> Why do you think you may have CMT instead of FM?

>

> CMT and fibromyalgia do have some symptoms in common.

>

> Kat in Seattle

[Guest guest]

Hi Kat,

Thank you for responding to my message. I have always been clumsy.

Falling going upstairs and bumping into things. I don't think my

feet are as affected as my upper body. My feet look ok and my calves

look ok. But my arms are very thin, no strength, and numbness and

tingling in my arms and hands. I know what you mean about the

symptoms being similiar. That is why I am going to be tested to see

what it is that I have. I have good range of motion but no stamna.

I tried cardiokickboxing for a while, but had a hard time keeping

up. My body would get tired after a short time. I guess I think I

have it because my brother just found out he had it and we have

similiar symptoms. I never gave it much thought before he was

diagnosed. But always wondered why the people in my fibro support

group were stiffening up and I was not. I wondered why I had the

range of motion they did not have. Actually I wondered why they were

making a big fuss about nothing. I didn't seem to be as bad as they

were. I know that is terrible to say because their pain is real. I

just didn't feel that I fit in that group but didn't have any other

ideas.

Thank you for your support.

Cindy

> Hi Cindy,

> Nice to meet you.

>

> In a message dated 5/31/00 4:33:05 PM, cindy2055@c... writes:

>

> << There is degeneration and worsening of symptoms. So, will I be

able to

> continue what I have been doing (when I thought I had fibro) with

CMT??? >>

>

> It may depend on what you have been doing!!

>

> CMTers are not necessarily affected a lot. Some are and some are

not. CMT is

> called progressive, but the rate is different with each of us. For

some it

> continues to be mild all one's life. There is NO way to predict,

and if

> anyone does there is no reason to believe what is said.

>

> Are your feet " funny? " Do you have trouble walking without tripping

or

> falling? What do your calves look like?

> How are your hands?

> Why do you think you may have CMT instead of FM?

>

> CMT and fibromyalgia do have some symptoms in common.

>

> Kat in Seattle

[Guest guest]

Hi a,

Thank you. I know from my brother's research that everyone is

affected differently. I don't know how things will turn out but I am

sure that I will handle it whatever it may be. I have a neice who

has those leg braces. She has a difficult time at times. I am not

at that point. But want to find out what I have for sure.

Thanks.

Cindy

> Welcome Cindy,

>

> My name is a. I am the mother of a 13yo daughter with CMT. I

don't have

> an answer to your question since I don't have the disease

personally. My

> daughter was diagnosed at age 8, wears leg braces below the knees

called

> AFO's(ankle-foot orthotics) but you'll hear slang AFO's. She is

very much

> ambulatory but is having some problems with her fingers curling

called

> " clawing " (I hate that term). but the one thing I have learned is

that this

> seems to affect everyone a little differently. Good luck with the

nerve

> conduction studies in July.

> a

[Guest guest]

Hi a,

Thank you. I know from my brother's research that everyone is

affected differently. I don't know how things will turn out but I am

sure that I will handle it whatever it may be. I have a neice who

has those leg braces. She has a difficult time at times. I am not

at that point. But want to find out what I have for sure.

Thanks.

Cindy

> Welcome Cindy,

>

> My name is a. I am the mother of a 13yo daughter with CMT. I

don't have

> an answer to your question since I don't have the disease

personally. My

> daughter was diagnosed at age 8, wears leg braces below the knees

called

> AFO's(ankle-foot orthotics) but you'll hear slang AFO's. She is

very much

> ambulatory but is having some problems with her fingers curling

called

> " clawing " (I hate that term). but the one thing I have learned is

that this

> seems to affect everyone a little differently. Good luck with the

nerve

> conduction studies in July.

> a

[Guest guest]

Sue, Lamar here,

Welcome to the list. You will learn a LOT and " meet " some great people. It

surely sounds like the USA is WAY behind when I hear what your country offers.

We have nothing like either of these programs. We do have something called SSI

(Supplemental Security Income), but qualification for that is based upon income

and you must be well below the poverty level to qualify. While a portion of

medical expenses is deductible from income tax (if they are large enough to

qualify) ; transportation, vehicles, and household help are not covered in any

way. They come out of our pocket.

I am a retired Registered Nurse, and became disabled at the age of 49 due to

CMT. (I am now 52) It was only then that I realized how behind the US is in

many ways. I am on other CMT mailing lists including the one from CMT

International. There are several from the UK on it, and I have been amazed at

how much help they get. In many instances, if we can sit, dial a phone, and

talk, we are judged to be able to work; thereby failing to qualify for any

assistance. So consider yourself blessed.

Hello

Hello.

My name is Sue Horder-Mason and I'm new to the group, thanks to Gretchen.

I have been following your emails with great interest and would have introduced

myself earlier but my computer curled up its toes and refused to co-operate with

anyone or anything. I could receive emails but couldn't send them. I didn't

discover this until a week after it initially happened, so I was sending them

and was getting paranoid that no one was listening to me. (Sob, sob)

Anyway I'm back on line.

I've been fascinated by the stories I've been reading about how you guys

have to fight for financial support because of being disabled. I live in England

and I'm sorry to say but we have exactly the same types of problems over here. I

have been awarded full mobility allowance which enables me to lease a car (if I

so desire) or money to help me get about. I'm in a wheelchair. I have also been

awarded Severe Disablement Allowance because I'm classed as 80% disabled but

have been turned down for simple Disability Living Allowance which is supposed

to help me pay for help etc around the home. The irony of this is that normally

to qualify for Severe Disablement Allowance I have to be in receipt of

DisablilityLiving Allowance. When I queried this I was told that they were two

different departments and had nothing to do with each other. Confused? So am I.

So I can appreciate the problems the rest of you are having and all I can do is

wish you the very best of luck.

Love

Sue

[Guest guest]

Sue Horder-Mason wrote:

>

> Hello.

> My name is Sue Horder-Mason and I'm new to the group, thanks to Gretchen.

I have been following your emails with great interest and would have introduced

myself earlier but my computer curled up its toes and refused to co-operate with

anyone or anything. I could receive emails but couldn't send them. I didn't

discover this until a week after it initially happened, so I was sending them

and was getting paranoid that no one was listening to me. (Sob, sob)

> Anyway I'm back on line.

> I've been fascinated by the stories I've been reading about how you guys

have to fight for financial support because of being disabled. I live in England

and I'm sorry to say but we have exactly the same types of problems over here. I

have been awarded full mobility allowance which enables me to lease a car (if I

so desire) or money to help me get about. I'm in a wheelchair. I have also been

awarded Severe Disablement Allowance because I'm classed as 80% disabled but

have been turned down for simple Disability Living Allowance which is supposed

to help me pay for help etc around the home. The irony of this is that normally

to qualify for Severe Disablement Allowance I have to be in receipt of

DisablilityLiving Allowance. When I queried this I was told that they were two

different departments and had nothing to do with each other. Confused? So am I.

So I can appreciate the problems the rest of you are having and all I can do is

wish you the very best of luck.

>

> Love

> Sue

>

>

[Guest guest]

Hi, Gang ...

For all those who think Socialism is the greatest, I would like to recommend

three books: 1. The Road to Serfdom " by F. A. Hayek.

2. " Atlas Shrugged " by Ayn Rand. 3. " The Law " by Frederic Bastiat. I know the

benefits seem great in England, Sweden, etc., ... but look at the tax rates!

And is anything worthwhile still being produced by their private sectors?

" Ella " says hi to everyone ...

[Guest guest]

Welcome . Lamar here,

Glad to have you in the group. There is a lot to learn and share here. I am a

52 y/o male from south GA and at least the third generation with CMT in my

family (probably fifth). I have one AFO and must use a cane, but my CMT is

progressing. BTW, I am retired as an RN, after 30 years in mental health

care--due to my CMT.

You sound like you do a lot of good work, in fact it reminds me of my late

mother who had CMT and constantly did sewing for various charities..

Bless you and again, a BIG welcome.

Hello

Hello-

I'm new to the list. I'm Swain, I have CMT type 1A,

diagnosed about 3 years ago. So far it is fairly mild--from

what I have seen. I live in Colorado with my

family--husband and six children. I keep busy with charity

work sewing for babies. I have been working with Newborns

in Need, but I am in the midst of starting my own group here

in Colorado called Warm Hearts~Warm Babies. I am active in

our local CMT support group in Colorado and always happy to

meet new friends to share with.

Glad to be here.

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

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

[Guest guest]

Welcome

I am the mother of who is 14 and has CMT type 2 they believe. Hope you

enjoy the group, there is alot to learn from everyone.

a('s proud mom)

[Guest guest]

Welcome

I am the mother of who is 14 and has CMT type 2 they believe. Hope you

enjoy the group, there is alot to learn from everyone.

a('s proud mom)

[Guest guest]

Welcome

I am the mother of who is 14 and has CMT type 2 they believe. Hope you

enjoy the group, there is alot to learn from everyone.

a('s proud mom)

[Guest guest]

Judy - Wondered where you had been! It does sound like you have been busy.

Hope the move goes smoothly. The OHIO SUPPORT GROUP will welcome you with

eager arms. Be sure to let me know when you are available. We plan to have

a meeting sometime in March and hopefully every month or so after that.

What city did you decide to move to? Wilmington? Love & Prayers, Ned & Judy

B.

[Guest guest]

Judy - Wondered where you had been! It does sound like you have been busy.

Hope the move goes smoothly. The OHIO SUPPORT GROUP will welcome you with

eager arms. Be sure to let me know when you are available. We plan to have

a meeting sometime in March and hopefully every month or so after that.

What city did you decide to move to? Wilmington? Love & Prayers, Ned & Judy

B.

[Guest guest]

Judy - Wondered where you had been! It does sound like you have been busy.

Hope the move goes smoothly. The OHIO SUPPORT GROUP will welcome you with

eager arms. Be sure to let me know when you are available. We plan to have

a meeting sometime in March and hopefully every month or so after that.

What city did you decide to move to? Wilmington? Love & Prayers, Ned & Judy

B.

[Guest guest]

Angelina,

Welcome back to the list.

Mom to Elliot

14mths wcf

[Guest guest]

Welcome!!!!!! Glad u made it back !! Crystal, Mom of Ty 8yrs W cf

[Guest guest]

WELCOME back!! Hope all stays running smoothly for you now.

LOVE & HUGS, GRDMBEV

Hello

HI, MY NAME IS ANGELINA. IAM A SINGLE MOM OF THREE KIDS. TWO

TEENAGE GIRLS WOCF AND A 8 YEAR OLD BOY WCF " MIKEY " . I LIVE IN THE

USA IN THE STATE OF OREGON. I JOINED THIS GROUP IN THE PAST AND

REALLY FOUND COMFORT HERE. NOW THAT MY COMPUTER IS UP AND RUNNING

AGAIN IM GLAD TO BE BACK.

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Angelina,

Welcome back! I've found this list to be a real

source of sanity for me. Although I'm not the most

prolific poster, I enjoy hearing from everyone and

getting such great advice.

Is Mikey your son's nickname for ? My son's

name is as well, but we call him Mick or

Mickey when we're especially affectionate. Though

I'm not really a Stones fan, I've always liked

Mick Jaegger's name (I may have misspelled his last

name, which proves I'm not a big fan! LOL).

C

Mommy to Mick and Alli, 2 yo twins wcf

--- angelinanurse 4larsons@...> wrote:

> HI, MY NAME IS ANGELINA. IAM A SINGLE MOM OF THREE

> KIDS. TWO

> TEENAGE GIRLS WOCF AND A 8 YEAR OLD BOY WCF " MIKEY " .

> I LIVE IN THE

> USA IN THE STATE OF OREGON. I JOINED THIS GROUP IN

> THE PAST AND

> REALLY FOUND COMFORT HERE. NOW THAT MY COMPUTER IS

> UP AND RUNNING

> AGAIN IM GLAD TO BE BACK.

>

>

>

>

__________________________________________________