Re: before '70's diagnosis

[Guest guest]

In a message dated 12/19/01 8:00:01 PM, slemin46@... writes:

<< Is there anyone in this group that didn't develop the symptoms until past

40 or 50? >>

My grandmother, my aunt, my mom and me. The first three in their 70s and me

in my 50s. My grandmother was adopted long before records were kept out in

the country, so we can't trace her family.

I thought MDA did testing for CMT. I didn't know one had to already be

diagnosed.

Kat

Seattle USA

[Guest guest]

Hey, Gretchen and ALL,

I'm sorry, you misunderstood. I just wanted people to know about MDA

SERVICES because they are already diagnosed and for those who can't

afford or don't have insurance or need to go to a clinic - the MDA

SERVICES include, free orthodics, etc. Just to clarify, I COMPLETELY

understand about the MDA Doctors! But being on medicare-disability, I

have had to use their services ever since I was independent at 17, so I

kinda got familiar with their system. I haven't been to an MDA clinic

since 2-3 years before I moved to San Francisco 9 years ago. Wow, that's

like 11 years, now I fel OLD. I am going in January for the first time,

for the Occupational Therapy - all 6 free sessions

What I was trying to get at, that must have ALSO been confusing - Maybe

I shouldn't be allowed to type before 9 am - Anyway, was that, I was

just wondering if people diagnosed BEFORE the mid 70's, have had a

harder time than those diagnosed more recently. Sorry, I guess I must

have worded it wrong before.

I, too, have MY DOC, and a group of other physicians I see also - all

private. I 'hand-selected.' WHO my doc is - that is VERY important to

me. Doc Bob, my physcian now, I choose him during his very last

fellowship year - he hadn't even taken his boards! But I've 'trained'

him well. In fact, I'M actually PROUD of him, he Jjust opened his own

practice.

Gretchen, as you know, but some others may not, my mother was diagnosed

in 1952 with POLIO. She lived her whole life wondering why it was

getting worse. When I was born in 1965, they thought my foot deformities

were birth defects. My mom was diagnosed by an Orthopedist too. She was

hospitalized in 1976 with a severe 'pinched nerve,' the Orthopedic

surgeon who 'happened' to see her in the hospital figured it out just

with a quick evaluation. Then he ordered a work-up to prove it. Me & my

brother (he's 2 years older than me) were tested immediately. I remember

the Doctor who did MY testing at the hospital when I was 11, he looked

at my mom and said, " well, I hope she doesn't want play the piano when

she grows up. " What a jerk. I think, " The test is positive, " would have

sufficed. Our original diagnosis in 1976 was " CMT, Demylinating. " My

mom left the hospital, never to see that Doc who diagnosed her ever

again. We all followed up with our 'family' doctor. This guy was like

200 years old, it's Amish country USA - he ACTUALLY had to look it up in

a book - right in front of us - He said, " Oh, don't worry, they won't

even notice there's anything wrong. " So, every time I had a 'symptom,' I

never mentioned it. We were rediagnosed at Presby in NYC back in the

late 80's, I think, with 'Dejerine -Sottas.'

I was wondering, was anyone else diagnosed with Polio during the 1952

outbreak (I think that was the year) and was then rediagnosed with CMT?

Sorry for all the confusion, I truly am!

Everyone take good care,

Peace & Love

Judy g.

Gretchen Glick wrote:

> Judy and all, I WAS diagnosed with CMT in 1962. I was 10. Why I got a

>

> diagnosis at that time, who knows? But the Dr. could tell by the way I

>

> walked, which was surgically corrected. The Dr. was an orthopedist,

> and

> no, I certainly do not have 'classic' CMT, as many of you know. I am

> grateful I was diagnosed and had early and ongoing care, although in

> my

> late teens/twenties, turned my back on the entire medical world. Judy,

> I

> know MDA does great work, and I am happy for you and everyone else who

>

> has good treatment from them. Unfortunately, that was not my

> experience

> and I found a plethora of wonderful private physicians to help me and

> get the care I needed, NOT what MDA wanted me to have.

>

> I am so sorry so many of you have had such negative experiences with

> diagnosis and or treatment.

>

>

[Guest guest]

Hey Gretchen,

Yeah, me & my brother were both vacinated. I guess, with the

'outbreak,'it was bad timing combined with my mom's gait, foot

deformities, they paniced and jumped to the WRONG conclusion. Wrong year

to be born with CMT/DS, I guess - Yeah, MDA is weird - they used to

cover just about EVERYTHING, but they changed and said they were taking

the money they were spending on direct patient care and using it for

research. Gee, ironically that was the year I stopped going to clinic

Lots 'o love

Judy g.

Gretchen Glick wrote:

> Judy, so sorry about your Mom, the polio and all. I was born in '52

> and

> lucky a few years later began the vacination program for Polio. Were

> you

> and your brother not vacinnated as infants in the 60'S? We have had

> some

> past discussions here about MDA and what is covered and what is not.

> Here in the States it appears diverse. I wrote to MDA to inquire

> EXACTLY, lol, they referred me to clinic in LA! lol ~ Gretchen

>

>

[Guest guest]

Hey Gretchen,

Yeah, me & my brother were both vacinated. I guess, with the

'outbreak,'it was bad timing combined with my mom's gait, foot

deformities, they paniced and jumped to the WRONG conclusion. Wrong year

to be born with CMT/DS, I guess - Yeah, MDA is weird - they used to

cover just about EVERYTHING, but they changed and said they were taking

the money they were spending on direct patient care and using it for

research. Gee, ironically that was the year I stopped going to clinic

Lots 'o love

Judy g.

Gretchen Glick wrote:

> Judy, so sorry about your Mom, the polio and all. I was born in '52

> and

> lucky a few years later began the vacination program for Polio. Were

> you

> and your brother not vacinnated as infants in the 60'S? We have had

> some

> past discussions here about MDA and what is covered and what is not.

> Here in the States it appears diverse. I wrote to MDA to inquire

> EXACTLY, lol, they referred me to clinic in LA! lol ~ Gretchen

>

>

[Guest guest]

My mother was a polio victim. She contracted about

1933. When Jonas Salk's vaccine became public about

1953/54 my younger brother and myself were some of the

first in line to get vaccinated at our school. The

shot cost us a dime. I was 7 and my brother was 2.

My father was the CMT person. He and Mama walked

about the same and I never even thought about it. To

me they were normal. It was my grandmother (maternal)

that thought I was copying them and told me to

straighten up.

Daddy was diagnosed in 1961 at Seely Hospital in

Galveston, Texas. At the beginning they thought he

had Fredericks Ataxia and then a few years later

changed it to CMT. Daddy died of throat cancer in

1971, a very " crippled up " and gnarled man, bitter and

resentful.

My son, Jimmy, and the eldest of four children is the

only child that does have CMT and he looks and walks

exactly like Daddy did. His hands are beginning to

gnarl up and he has trouble with doing small things.

But he takes care of his 4 children (2 of which are

twins) and the home while Dawn,my brave

daughter-in-law, works. There doesn't seem to be any

signs of CMT in the other 3 children, unless you count

orneriness. Unless they develop the symptoms in their

later years as I am beginning to notice in my hands.

Is there anyone in this group that didn't develop the

symptoms until past 40 or 50? My husband and I just

moved to southwest Florida this past summer, to be

warm this winter. I started having sever hand

numbness, tingling and pain in the past 2 months. The

Dr. I went to see wanted to diagnose me as having

Raynaud's Phenomenon which is a case of the small

arteries closing up due to COLD, and FROST BITE, some

of the suffers of this have to wear lined gloves just

to get things out of Fridge. Guess what, I live in one

of warmest parts of the United States, the coldest it

has been since we moved here was last night, a whole

59 degrees, I don't conceder that cold, but my hands

sure did hurt all night unless I tucked them into the

warmest part of my body. And, then they went numb and

still hurt.

I would like to hear from someone that knows a little

about Dr.'s in the Ft. Myers, Florida area if there

are any of you out there. I have considered

contacting MDA but know I have to be officially

diagnosed before they can help me. My son's children

are due for their DNA testing sometime this next

summer. The eldest is 7 and she is not showing any

signs of symptoms yet. The next in line is a

bosterious boy and the twins just turned a year old

this September.

Thanks for listening to me. (By the way it took me

about 30 minutes to type this and correct my mistakes

and I am a good typist.)

Susie McFarland Lemin

PS are there any of you good folks tracing your family

trees? I can trace this CMT back to 1823 with my

great great grandfather, Elisha M. , I believe

his mother may have been the carrier, beth

Moseley. Elisha's daughter, Rosella married a Jerome

Snodgrass and all of her sons were " crippled " . Her

daughter, Ettie Snodgrass's 2 sons were both diagnosed

with CMT, my father and my uncle.

sml

__________________________________________________

[Guest guest]

Hi Susie,

Wow, that's a fascinating story! My dad and stepmom live in Sarasota

(sp?) Is that near you? If it is, have I got some irony. My dad, who

never believed I had 'pain' in my feet and legs when I was young, has

recently been diagnosed with 'Alcohol induced Neuropathy.' Anyway, they

have been down there four about 6 years now, I'm sure if you live near

them, my stepmom, a wonderful woman (she reminds me of June Cleaver) She

is just so nice. So let me know and maybe you can contact her via email

to help you assimilate. It took a while, but they love it there now.

Peace & Love

Judy g.

Susie Lemin wrote:

> My mother was a polio victim. She contracted about

> 1933. When Jonas Salk's vaccine became public about

> 1953/54 my younger brother and myself were some of the

> first in line to get vaccinated at our school. The

> shot cost us a dime. I was 7 and my brother was 2.

>

> My father was the CMT person. He and Mama walked

> about the same and I never even thought about it. To

> me they were normal. It was my grandmother (maternal)

> that thought I was copying them and told me to

> straighten up.

>

> Daddy was diagnosed in 1961 at Seely Hospital in

> Galveston, Texas. At the beginning they thought he

> had Fredericks Ataxia and then a few years later

> changed it to CMT. Daddy died of throat cancer in

> 1971, a very " crippled up " and gnarled man, bitter and

> resentful.

>

> My son, Jimmy, and the eldest of four children is the

> only child that does have CMT and he looks and walks

> exactly like Daddy did. His hands are beginning to

> gnarl up and he has trouble with doing small things.

> But he takes care of his 4 children (2 of which are

> twins) and the home while Dawn,my brave

> daughter-in-law, works. There doesn't seem to be any

> signs of CMT in the other 3 children, unless you count

> orneriness. Unless they develop the symptoms in their

> later years as I am beginning to notice in my hands.

>

> Is there anyone in this group that didn't develop the

> symptoms until past 40 or 50? My husband and I just

> moved to southwest Florida this past summer, to be

> warm this winter. I started having sever hand

> numbness, tingling and pain in the past 2 months. The

> Dr. I went to see wanted to diagnose me as having

> Raynaud's Phenomenon which is a case of the small

> arteries closing up due to COLD, and FROST BITE, some

> of the suffers of this have to wear lined gloves just

> to get things out of Fridge. Guess what, I live in one

> of warmest parts of the United States, the coldest it

> has been since we moved here was last night, a whole

> 59 degrees, I don't conceder that cold, but my hands

> sure did hurt all night unless I tucked them into the

> warmest part of my body. And, then they went numb and

> still hurt.

>

> I would like to hear from someone that knows a little

> about Dr.'s in the Ft. Myers, Florida area if there

> are any of you out there. I have considered

> contacting MDA but know I have to be officially

> diagnosed before they can help me. My son's children

> are due for their DNA testing sometime this next

> summer. The eldest is 7 and she is not showing any

> signs of symptoms yet. The next in line is a

> bosterious boy and the twins just turned a year old

> this September.

>

> Thanks for listening to me. (By the way it took me

> about 30 minutes to type this and correct my mistakes

> and I am a good typist.)

>

> Susie McFarland Lemin

>

> PS are there any of you good folks tracing your family

> trees? I can trace this CMT back to 1823 with my

> great great grandfather, Elisha M. , I believe

> his mother may have been the carrier, beth

> Moseley. Elisha's daughter, Rosella married a Jerome

> Snodgrass and all of her sons were " crippled " . Her

> daughter, Ettie Snodgrass's 2 sons were both diagnosed

> with CMT, my father and my uncle.

>

> sml

>

> __________________________________________________

>

[Guest guest]

Hey Kat,

MDA is weird that way, you need a diagnosis and Dr's referral to be

processed, put into the system and then get an appointment at Clinic -

Hey, no one said it had to be the 'right' diagnosis-lol. Just kidding!

Although, maybe each state or Chapter is different. I know I had to have

my Doc write something stating diagnosis and why I needed to be seen.

Peace & Love

Judy g.

KathleenLS@... wrote:

>

> In a message dated 12/19/01 8:00:01 PM, slemin46@... writes:

>

> << Is there anyone in this group that didn't develop the symptoms

> until past

> 40 or 50? >>

>

> My grandmother, my aunt, my mom and me. The first three in their 70s

> and me

> in my 50s. My grandmother was adopted long before records were kept

> out in

> the country, so we can't trace her family.

>

> I thought MDA did testing for CMT. I didn't know one had to already be

>

> diagnosed.

>

> Kat

> Seattle USA

>

>

[Guest guest]

In a message dated 12/19/01 10:16:24 PM, stronggirl2@... writes:

<< MDA is weird that way, you need a diagnosis and Dr's referral to be

processed, put into the system and then get an appointment at Clinic - >>

The plot thickens. Up here, I just phoned them to ask a question, mentioned I

had CMT, and started receiving their Quest magazine soon after. I've never

even been to their place, wherever it may be, but they were willing to have

me make an appointment to come in at my convenience. I don't need anything,

so I didn't do it.

Kat

Seattle

[Guest guest]

Hi Judy,

My Daddy said he drank to ease the pain. My son says

he smokes pot for the same reason. I am a T-totaler

myself and don't approve of either one, but if it

helps it helps and God Bless. I should add here my

husband also drinks beer everynight. People in glass

houses...you know LOL

Yes I would love to hear from your parents. Sarasota

is just " up the road " from here, I think, close to

Tampa. I really need to see a competent Dr. or two

that will listen to me and either agree or disagree. I

feel that if they refer me to MDA I may get to the

truth one way or the other. If my symptoms are not

CMT related I will be a happy camper, but I want to

know what in the blazes is going on with my body! I

am only 55 and there are a lot of things still to do!

I use my hands so much all the time, I crochet, sew by

hand, embroidery, and do crafty things that require

hand coordination. I would hate to not be able to do

any of them. If we find out that I don't have CMT,

but something else that can be remedied that would be

cool. If I actually do have CMT then I want to be able

to learn to deal with that. I should be able to

retire in about 10 more years and there are a lot of

places, people and things that need to be seen. I

need to prepare the best I can.

And I need to learn to say " God's Will not mine "

Thank you for answering me.

Susie

--- Judy Piersol <stronggirl2@...> wrote:

> Hi Susie,

> Wow, that's a fascinating story! My dad and stepmom

> live in Sarasota

> (sp?) Is that near you? If it is, have I got some

> irony. My dad, who

> never believed I had 'pain' in my feet and legs when

> I was young, has

> recently been diagnosed with 'Alcohol induced

> Neuropathy.' Anyway, they

> have been down there four about 6 years now, I'm

> sure if you live near

> them, my stepmom, a wonderful woman (she reminds me

> of June Cleaver) She

> is just so nice. So let me know and maybe you can

> contact her via email

> to help you assimilate. It took a while, but they

> love it there now.

> Peace & Love

> Judy g.

>

> Susie Lemin wrote:

>

> > My mother was a polio victim. She contracted

> about

> > 1933. When Jonas Salk's vaccine became public

> about

> > 1953/54 my younger brother and myself were some of

> the

> > first in line to get vaccinated at our school.

> The

> > shot cost us a dime. I was 7 and my brother was

> 2.

> >

> > My father was the CMT person. He and Mama walked

> > about the same and I never even thought about it.

> To

> > me they were normal. It was my grandmother

> (maternal)

> > that thought I was copying them and told me to

> > straighten up.

> >

> > Daddy was diagnosed in 1961 at Seely Hospital

> in

> > Galveston, Texas. At the beginning they thought

> he

> > had Fredericks Ataxia and then a few years later

> > changed it to CMT. Daddy died of throat cancer in

> > 1971, a very " crippled up " and gnarled man, bitter

> and

> > resentful.

> >

> > My son, Jimmy, and the eldest of four children is

> the

> > only child that does have CMT and he looks and

> walks

> > exactly like Daddy did. His hands are beginning

> to

> > gnarl up and he has trouble with doing small

> things.

> > But he takes care of his 4 children (2 of which

> are

> > twins) and the home while Dawn,my brave

> > daughter-in-law, works. There doesn't seem to be

> any

> > signs of CMT in the other 3 children, unless you

> count

> > orneriness. Unless they develop the symptoms in

> their

> > later years as I am beginning to notice in my

> hands.

> >

> > Is there anyone in this group that didn't develop

> the

> > symptoms until past 40 or 50? My husband and I

> just

> > moved to southwest Florida this past summer, to be

> > warm this winter. I started having sever hand

> > numbness, tingling and pain in the past 2 months.

> The

> > Dr. I went to see wanted to diagnose me as having

> > Raynaud's Phenomenon which is a case of the small

> > arteries closing up due to COLD, and FROST BITE,

> some

> > of the suffers of this have to wear lined gloves

> just

> > to get things out of Fridge. Guess what, I live in

> one

> > of warmest parts of the United States, the coldest

> it

> > has been since we moved here was last night, a

> whole

> > 59 degrees, I don't conceder that cold, but my

> hands

> > sure did hurt all night unless I tucked them into

> the

> > warmest part of my body. And, then they went numb

> and

> > still hurt.

> >

> > I would like to hear from someone that knows a

> little

> > about Dr.'s in the Ft. Myers, Florida area if

> there

> > are any of you out there. I have considered

> > contacting MDA but know I have to be officially

> > diagnosed before they can help me. My son's

> children

> > are due for their DNA testing sometime this next

> > summer. The eldest is 7 and she is not showing any

> > signs of symptoms yet. The next in line is a

> > bosterious boy and the twins just turned a year

> old

> > this September.

> >

> > Thanks for listening to me. (By the way it took me

> > about 30 minutes to type this and correct my

> mistakes

> > and I am a good typist.)

> >

> > Susie McFarland Lemin

> >

> > PS are there any of you good folks tracing your

> family

> > trees? I can trace this CMT back to 1823 with my

> > great great grandfather, Elisha M. , I

> believe

> > his mother may have been the carrier, beth

> > Moseley. Elisha's daughter, Rosella married a

> Jerome

> > Snodgrass and all of her sons were " crippled " . Her

> > daughter, Ettie Snodgrass's 2 sons were both

> diagnosed

> > with CMT, my father and my uncle.

> >

> > sml

> >

> > __________________________________________________

> >

[Guest guest]

Kat,

Thanks for the answer, it makes me feel that I am not

conjuring up " bogies " and may have some real concerns

to be tended to.

Susie

--- KathleenLS@... wrote:

>

> In a message dated 12/19/01 8:00:01 PM,

> slemin46@... writes:

>

> << Is there anyone in this group that didn't develop

> the symptoms until past

> 40 or 50? >>

>

> My grandmother, my aunt, my mom and me. The first

> three in their 70s and me

> in my 50s. My grandmother was adopted long before

> records were kept out in

> the country, so we can't trace her family.

>

> I thought MDA did testing for CMT. I didn't know one

> had to already be

> diagnosed.

>

> Kat

> Seattle USA

>

__________________________________________________

[Guest guest]

Susie here AGAIN

I forgot to mention that for AGES, we (the

McFarland-Snodgrass) family thought that this disease

was totally a male thing. None of the females have

had it (that we are aware of, who knows now) they just

passed the gene on to their sons. But as I started to

look at my genealogy I could see major flaws in that

theory. This site and other research I am doing is

really helping me. THANKS!!!!!!!!!!!

For years I looked for the Snodgrass ancestors

" knowing " that this is where the " crippledness " came

form. Not until 2 years ago when I received a memoir

of Great Uncle Errol l's did I learn it was the

's and perhaps Moseley's.

For those that are interested this is what our tree

looks like; If not stop reading and delete: LOL

Male , my son 1966, afflicted

Female Me, Susie 1946, CARRIER????

Male Father, Ray McFarland 1909, afflicted

Male Uncle, Glenn McFarland ,afflicted - no children

Female Grandmother, Ettie Snodgrass McFarland, carrier

(she died when Daddy was 9)

Males Great Uncles, Horace, Aubrey, , Erroll

Snodgrass, Afflicted

Females Cousins, Nita and Winona Snodgrass, Aubrey's

daughters carriers

Males both of their sons, afflicted

Female Great Grandmother, Rosella Snodgrass,

carrier

Male Great great Uncle, Armel, Afflicted

Male Great Grandfather, Elisha , afflicted

So you can see why I thought only the male members

were afflicted and females carriers. I wonder how

many of the females were actually afflicted and was

thought to have Rheumatism or Arteritis?

__________________________________________________

[Guest guest]

Susie the way your families CMT is shown is unusual but it is also misleading.

There are no carriers with CMT but you right in thinking that the female members

did have the disease. In every family the sypmtoms vary.

My father was in the Royal Air Force for 12 years and had been passed as fit -

he has a very mild form of CMT. I'm in a wheelchair with most bits of me failing

and yet my sister who is two and a half years younger than me is a nurse, walks

about etc and she has CMT but very mild. My two eldest sons also have it. They

both have very flat feet (like mine) but no 2 sons feet are starting to twist.

Very different symptoms but all have CMT.

Someone might step in here and talk about X-linked CMT and if they feel it is

relevant I hope they do because I must admit I know little about this but this

is my understanding of CMT - hopefully you'll find it useful and also I know you

are aware that it doesn't affect the male side by asking about other symptoms

that can easily be misdiagnosed by those who know little or even less about this

condition than they should.

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: Susie Lemin

Sent: Thursday, December 20, 2001 11:52 PM

Subject: Re: [] before '70's diagnosis

Susie here AGAIN

I forgot to mention that for AGES, we (the

McFarland-Snodgrass) family thought that this disease

was totally a male thing. None of the females have

had it (that we are aware of, who knows now) they just

passed the gene on to their sons. But as I started to

look at my genealogy I could see major flaws in that

theory. This site and other research I am doing is

really helping me. THANKS!!!!!!!!!!!

For years I looked for the Snodgrass ancestors

" knowing " that this is where the " crippledness " came

form. Not until 2 years ago when I received a memoir

of Great Uncle Errol l's did I learn it was the

's and perhaps Moseley's.

For those that are interested this is what our tree

looks like; If not stop reading and delete: LOL

Male , my son 1966, afflicted

Female Me, Susie 1946, CARRIER????

Male Father, Ray McFarland 1909, afflicted

Male Uncle, Glenn McFarland ,afflicted - no children

Female Grandmother, Ettie Snodgrass McFarland, carrier

(she died when Daddy was 9)

Males Great Uncles, Horace, Aubrey, , Erroll

Snodgrass, Afflicted

Females Cousins, Nita and Winona Snodgrass, Aubrey's

daughters carriers

Males both of their sons, afflicted

Female Great Grandmother, Rosella Snodgrass,

carrier

Male Great great Uncle, Armel, Afflicted

Male Great Grandfather, Elisha , afflicted

So you can see why I thought only the male members

were afflicted and females carriers. I wonder how

many of the females were actually afflicted and was

thought to have Rheumatism or Arteritis?

__________________________________________________

[Guest guest]

--- Susie Lemin <slemin46@...> wrote:

> My mother was a polio victim. She contracted about

> 1933. When Jonas Salk's vaccine became public about

> 1953/54 my younger brother and myself were some of

> the

> first in line to get vaccinated at our school. The

> shot cost us a dime. I was 7 and my brother was 2.

>

> My father was the CMT person. He and Mama walked

> about the same and I never even thought about it.

> To

> me they were normal. It was my grandmother

> (maternal)

> that thought I was copying them and told me to

> straighten up.

>

> Daddy was diagnosed in 1961 at Seely Hospital

> in

> Galveston, Texas. At the beginning they thought he

> had Fredericks Ataxia and then a few years later

> changed it to CMT. Daddy died of throat cancer in

> 1971, a very " crippled up " and gnarled man, bitter

> and

> resentful.

>

> My son, Jimmy, and the eldest of four children is

> the

> only child that does have CMT and he looks and walks

> exactly like Daddy did. His hands are beginning to

> gnarl up and he has trouble with doing small things.

> But he takes care of his 4 children (2 of which are

> twins) and the home while Dawn,my brave

> daughter-in-law, works. There doesn't seem to be

> any

> signs of CMT in the other 3 children, unless you

> count

> orneriness. Unless they develop the symptoms in

> their

> later years as I am beginning to notice in my hands.

>

> Is there anyone in this group that didn't develop

> the

> symptoms until past 40 or 50? My husband and I just

> moved to southwest Florida this past summer, to be

> warm this winter. I started having sever hand

> numbness, tingling and pain in the past 2 months.

> The

> Dr. I went to see wanted to diagnose me as having

> Raynaud's Phenomenon which is a case of the small

> arteries closing up due to COLD, and FROST BITE,

> some

> of the suffers of this have to wear lined gloves

> just

> to get things out of Fridge. Guess what, I live in

> one

> of warmest parts of the United States, the coldest

> it

> has been since we moved here was last night, a whole

> 59 degrees, I don't conceder that cold, but my hands

> sure did hurt all night unless I tucked them into

> the

> warmest part of my body. And, then they went numb

> and

> still hurt.

>

> I would like to hear from someone that knows a

> little

> about Dr.'s in the Ft. Myers, Florida area if there

> are any of you out there. I have considered

> contacting MDA but know I have to be officially

> diagnosed before they can help me. My son's

> children

> are due for their DNA testing sometime this next

> summer. The eldest is 7 and she is not showing any

> signs of symptoms yet. The next in line is a

> bosterious boy and the twins just turned a year old

> this September.

>

> Thanks for listening to me. (By the way it took me

> about 30 minutes to type this and correct my

> mistakes

> and I am a good typist.)

>

> Susie McFarland Lemin

>

> PS are there any of you good folks tracing your

> family

> trees? I can trace this CMT back to 1823 with my

> great great grandfather, Elisha M. , I believe

> his mother may have been the carrier, beth

> Moseley. Elisha's daughter, Rosella married a Jerome

> Snodgrass and all of her sons were " crippled " . Her

> daughter, Ettie Snodgrass's 2 sons were both

> diagnosed

> with CMT, my father and my uncle.

>

> sml

> Susie; It's Jim

I am one who was never diagnosed until after my 51st

birthday, looking back I had symptoms in my teens and

twenties, but neither me or my doctors figured it out.

I even had foot surgery in my thirties which further

masked the symptoms (and bought me a lot of time). My

dad had classic symptoms as did grandad and

great-grandmother (born in 1864). Beyond that we

haven't been able to trace it. Yes we are tracing our

family roots but this is difficult since we hail from

Birmingham U.K.. Family names and Earp.

It was the tragic accidental death of a young family

member that brought distant branches of the family

together that caused me to become aware of the CMT

(type II) in our family. I then realized that this

could be the explanation for the problems I was

having,(until this point writing it off as age

related) and sought medical opinions. This proved to

tax my mental stability to the limits LOL. Yes an old

family doctor of mine once said " If I didn't know

better I would say you might have had polio " . Yes, my

conditon has RAPIDLY gotten worse the past two years

and REALLY WORSE the past year. I walking badly now

and two years ago was running regularly! Cold weather

bothers my hands as you speak of. But I'm still as

happy as if I were in my " right mind " LOL.

Sincerely;

Jim Nash

P.S. I don't type worth a damn either!

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>