new to

[Guest guest]

Hello, just wanted to say " hi " and introduce myself. I am a 50 year old woman

who was diagnosed in Sept, 2000 at Mayo in Mn with CMT type II. No one else in

my extended family has this like I do but my brother thinks he has it. We

aren't sure which parent we got this from as no one shows symptoms like I do.

He isn't as affected as I am. I have the " webbing " between finger and thumb.

In fact that's how I started on this journey as my local Dr. noticed this and

said it wasn't normal. Plus I didn't have any reflexes when he hit my knee. I

have a scratchy voice from partial paralysis of vocal cords. Have trouble with

balance, walking, foot drop, not being able to climb stairs, claw like hands

etc. I do not have much real pain, just fatigue. I have had several episodes

of burning feet which is awful. I have sweaty hands and feet even when cold.

Speaking of cold, my hands do not work at all if they get cold which in WY

happens alot! Can't write a check if I go to the grocery store and they get

cold. Would really like to start some kind of exercise program to help me get

stronger. I worked almost all my adult life until 3 years ago when I quit the

job I'd had for 15 years. Lots of standing and typing which was getting too

difficult. I didn't understand what was wrong with me. I'd try to get dressed

and it would take forever to do the buttons on my blouse. It was a relief in a

way when I was diagnosed to know there really was something wrong with me! My

husband has been great except he wants me to get a wheelchair for when we go

places where we have to walk alot and he wants me to apply for SSDI. I don't

think I could get it. I'm an truly worried as I think my son has this too. He

is almost 28 but has always been clumsy and lots of ankle sprains. Will break

my heart if I passed this on to him. And he has a 1 year old daughter who I

also worry about. My daughter 26 seems to be okay but is expecting her first

child in May. How could I do this to my children and grandchildren? Life is NOT

fair. I get depressed often and am isolated with not working. Hope to get some

good vibes from you all and lots of good advice and info. Thanks for reading

and listening! Will be in touch.

[Guest guest]

Hi ,

It sure sounds like the CMT problem. Have you discussed the possibility of

DNA Blood Tests. 5 types are now available to definitive Dx. Weak ankle

twisting is associated with Varus Heel (bent to the side).

NOW HEAR THIS - Please don't feel bad or guilty about passing it on to

children. First of all there is a basic 50% chance of that happening anyway.

Second you didn't know about it at the time and we all need to find out how

to live with it as it is not going to go away. Third is the very great

variability of the severity of symptoms that occurs in most types and in

families. Fourth is it is not a fairness issue at all as it's just another

hurdle to get over in life and most of the times these hurdles make us

stronger in spirit and mind. Finally, fifth is hope because an appreciable

amount of research is going on in neurological disorders and we will see

some treatments and remedies some day. The loss to society of productive

individuals is being taken notice of and will be the impetus behind this

research. So read on and learn and be of good cheer - you are not alone and

many caring friends are here to help. - EdM

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

From: Hanson <nhanson@...>

egroups <egroups>

Cc: Hanson <nhanson@...>

Date: Wednesday, January 03, 2001 8:44 PM

Subject: [] new to

How could I do this to my children and grandchildren? Life is NOT fair. I

get depressed often >

>

>

[Guest guest]

NOW HEAR THIS - Please don't feel bad or guilty about passing it on to

children. First of all there is a basic 50% chance of that happening anyway.

EdM--I appreciate the outlook and attitude you display in this reply very much.

We all need to be reminded that the only way we could have avoided the

possibility of " passing on the disease to our children and/or grandchildren " is

to have never have had children at all. (I can't imagine that many of us would

have chosen that option.) I know many CMTers in my family who are crippled by

the disease, but certainly that has not crippled their ability to live full,

productive lives. Ann

[Guest guest]

Hi Jim,

Previous doctors suspected that I might have some sort of peripheral

neuropathy but after several years of extensive tests a plaque showed up on

my MRI, thus the dx of MS became apparent. However, three years later I had

an attack of some kind (they thought a mini stroke, perhaps)

and I went in for another brain MRI and the plaque was gone AND there were no

others. Usually with MS, I would have had more by then, despite the

medication. But more important than that, one cannot have MS without plaques

on the brain. So......I underwent another EMG and nerve conduction test and

that's when new doctors confirmed CMT. I never had MS because they said the

prior " scar " on the brain was the result of migraines I had experienced back

in my college days. Those scars do go away with time which was the case in

my situation.

Hope that wasn't too wordy but that's about the shortest I can make this

incredible story. Many diseases mimic MS, which is why it is so hard to

diagnose. Believe me, I would much rather have CMT than MS and I thank my

lucky stars. I just wish my doctor could have been a bit more careful in his

diagnosis and I would have not have taken injections on a daily basis. Live

and learn, I suppose.

If it weren't for the continuous neck and back pain, my CMT wouldn't be that

bad. I am the only one in my family that has this and it cannot be found in

the past three generations. Call me lucky.

Good luck to you and thanks for responding!

Karon

[Guest guest]

I do have an AFO, however, my neuro said that if I used it for long periods

of time then the muscles would atrophy quicker, thus creating another

problem. A catch 22 I guess.

[Guest guest]

--- kedleson <kedleson@...> wrote:

> Hi Everyone,

>

> I just joined today and wanted everyone to know that

> I am thrilled to

> have found such a site. For the past five years I

> have been

> diagnosed with MS and have been taking injections

> daily. This past

> July I was told that I didn't have MS afterall! I

> have CMT. I do

> not know which type and don't know if it is that

> important to know

> the type. This disease is so new to me.

> My immediate question for now is how common are leg

> cramps with CMT

> and do others experience back and neck pain due to

> perhaps their gait

> problems. I have had horrible back and neck pain

> for the past

> several years and I think it is because my gait is

> messed up due to

> very weak feet. I would appreciate any feedback and

> advice. Thanks!!

>

> Karon

>

> Hi Karon. Yes leg cramps are very much a part of CMT

and your back pain could be the result of your gait.

I'm intrested, how did your doctors arrive at their

new conclusion?

Jim Nash

__________________________________________________

[Guest guest]

WELCOME KAREN!!!!!

HI! My name is Judy Garland Piersol, rather 'infamous' for emails that

can be epic in length - LOL. My mom was misdagnosised for 37 years with

a diagnosis of POLIO - (The only case of progressive polio in the

history of the world) Anyway, she accidently got more accurately

diagnosised with CMT after she said her back hurt from work. She was

hospitalized for the PAIN (Untimately it was a severe spasm from her

gait) anyway a neurologist took one look and well, first he laughed at

the Polio diagnosis, then he had a feeling it was CMT and sent her for

tests. I was eleven and had a history of deformed feet, severe

clumbsiness, leg cramping, etc. I still have LEG CRAMPS! I'm 36

A peripheral nerve specialist, sent me through all the tests and the

diagnosis was changed from the somewhat similiar CMT type I to TYPE 3 or

Dejerine-Sottas (they keep changing the name, but everything down to

genetics/my neurologist, everyone says my diagnosis is " Severe

Dejerine-Sottas with unusual mutations above arms and legs, " which means

it is considered 'more' severe, faster progression, blah, blah, blah

(not to mention it has about 6 other names, Type 3 patients generally

have enlarged, " onion-bulb " type nerves i.e. giant lumpy nerves, yes,

you could say, I've got some nerve - enough about me. The reason I told

you that, is that YES - I had excruiating neck and back pain, my whole

family (the one's with DS) do to. The doctors determined, which anyone

could tell by looking, that the PAIN was from my gait. I'm in an

electric wheelchair now, but if I walk in my apartment even with my

braces on - it looks like I am defying grafity. From head to toe -

actually from toe to head, sorry -LOL okay because I can't move my feet,

" permanant foot drop " my toes point straight out if you lift my leg.

So here's how it works - when you stand, your knees will compensate for

your feet by extending backward - (this severe hyperextension can really

hurt your knees) - Here's the toe to head:

*** feet flat, knees go back, your hips shift forward, you lower back

slopes in forward, you mid-to upper back, hunches over and then your

neck must 'crane' up to see. So when you stand your bottom half is like

this- ¿ snd your top half is like this - ? You get the idea - I only had

question mark to work with here -lol.

But seriously, each part of your body, starting with the weakest area,

your feet/lower legs, will comnpensate for the weakness and the rest of

your body will BEND to correct for it. This OBVIOUSLY causes

muscular-skelatal pain. And it can be severe, the muscles get so tight

and tired from holding you in this snake like position - it's going to

be painful.

I hope that helped. Have you been to an MDA clinic yet? Do you have any

leg bracing, wheelchair, etc?

I'm glad you found THIS group. There are some of the most wonderful

people in this here. Please ask questions, join in and if you need me -

my modem's always open!

Peace & Love to you & yours!

judy g.

kedleson wrote:

> Hi Everyone,

>

> I just joined today and wanted everyone to know that I am thrilled to

> have found such a site. For the past five years I have been

> diagnosed with MS and have been taking injections daily. This past

> July I was told that I didn't have MS afterall! I have CMT. I do

> not know which type and don't know if it is that important to know

> the type. This disease is so new to me.

> My immediate question for now is how common are leg cramps with CMT

> and do others experience back and neck pain due to perhaps their gait

> problems. I have had horrible back and neck pain for the past

> several years and I think it is because my gait is messed up due to

> very weak feet. I would appreciate any feedback and advice. Thanks!!

>

> Karon

>

>

>

[Guest guest]

-

Daily stretching and a strength-training workout has nearly cured me of my

leg cramps, which used to be severe. I used to suffer terribly from them.

You need to start slow, and work your way up to more advanced stages of

stretching. Also, I believe it's important to drink plenty of water to keep

your muscles hydrated. Good Luck! Kruser

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

From: Judy Piersol <stronggirl2@...>

< >

Sent: Saturday, December 15, 2001 10:42 AM

Subject: Re: [] New to

> WELCOME KAREN!!!!!

> HI! My name is Judy Garland Piersol, rather 'infamous' for emails that

> can be epic in length - LOL. My mom was misdagnosised for 37 years with

> a diagnosis of POLIO - (The only case of progressive polio in the

> history of the world) Anyway, she accidently got more accurately

> diagnosised with CMT after she said her back hurt from work. She was

> hospitalized for the PAIN (Untimately it was a severe spasm from her

> gait) anyway a neurologist took one look and well, first he laughed at

> the Polio diagnosis, then he had a feeling it was CMT and sent her for

> tests. I was eleven and had a history of deformed feet, severe

> clumbsiness, leg cramping, etc. I still have LEG CRAMPS! I'm 36

> A peripheral nerve specialist, sent me through all the tests and the

> diagnosis was changed from the somewhat similiar CMT type I to TYPE 3 or

> Dejerine-Sottas (they keep changing the name, but everything down to

> genetics/my neurologist, everyone says my diagnosis is " Severe

> Dejerine-Sottas with unusual mutations above arms and legs, " which means

> it is considered 'more' severe, faster progression, blah, blah, blah

> (not to mention it has about 6 other names, Type 3 patients generally

> have enlarged, " onion-bulb " type nerves i.e. giant lumpy nerves, yes,

> you could say, I've got some nerve - enough about me. The reason I told

> you that, is that YES - I had excruiating neck and back pain, my whole

> family (the one's with DS) do to. The doctors determined, which anyone

> could tell by looking, that the PAIN was from my gait. I'm in an

> electric wheelchair now, but if I walk in my apartment even with my

> braces on - it looks like I am defying grafity. From head to toe -

> actually from toe to head, sorry -LOL okay because I can't move my feet,

> " permanant foot drop " my toes point straight out if you lift my leg.

> So here's how it works - when you stand, your knees will compensate for

> your feet by extending backward - (this severe hyperextension can really

> hurt your knees) - Here's the toe to head:

> *** feet flat, knees go back, your hips shift forward, you lower back

> slopes in forward, you mid-to upper back, hunches over and then your

> neck must 'crane' up to see. So when you stand your bottom half is like

> this- ¿ snd your top half is like this - ? You get the idea - I only had

> question mark to work with here -lol.

> But seriously, each part of your body, starting with the weakest area,

> your feet/lower legs, will comnpensate for the weakness and the rest of

> your body will BEND to correct for it. This OBVIOUSLY causes

> muscular-skelatal pain. And it can be severe, the muscles get so tight

> and tired from holding you in this snake like position - it's going to

> be painful.

> I hope that helped. Have you been to an MDA clinic yet? Do you have any

> leg bracing, wheelchair, etc?

>

> I'm glad you found THIS group. There are some of the most wonderful

> people in this here. Please ask questions, join in and if you need me -

> my modem's always open!

> Peace & Love to you & yours!

> judy g.

>

>

>

> kedleson wrote:

>

> > Hi Everyone,

> >

> > I just joined today and wanted everyone to know that I am thrilled to

> > have found such a site. For the past five years I have been

> > diagnosed with MS and have been taking injections daily. This past

> > July I was told that I didn't have MS afterall! I have CMT. I do

> > not know which type and don't know if it is that important to know

> > the type. This disease is so new to me.

> > My immediate question for now is how common are leg cramps with CMT

> > and do others experience back and neck pain due to perhaps their gait

> > problems. I have had horrible back and neck pain for the past

> > several years and I think it is because my gait is messed up due to

> > very weak feet. I would appreciate any feedback and advice. Thanks!!

> >

> > Karon

> >

> >

> >

[Guest guest]

Hi Todd ! You are ABSOLUTELY right when you say that one can not

assume that all of us will get every symptom described on this board.

And ALL newcomers should understand this fully! The major effect that

CMT has had on me is in my hands, which have atrophied.....yep, it's

a pain, but there's an awful lot of ways to compensate for it. I did

develop quite severe pain in my hips, enough to give me some problems

walking, and you know what? The hips suffer from plain old arthritis,

not a thing in the world to do with CMT. A daily dose of Celebrex has

me in great shape right now! So, I couldn't agree with you

more........Not everything that happens to us has to be connected to

CMT. This board is a fabulous resource for information on a subject

that I never heard of before the Doc told me I had it, CMT. However,

learn the facts and see how many cases are really quite moderate

compared to others...........Don't assume the worst! Count your

blessings and don't give in! Respects,

BobD

--- In @y..., " Todd Craig " <toddcraig@o...>

wrote:

> Hi

> Welcome to the site. I do read a lot of the info the people read on

this

> site but usually don't ad much input myself. I to have been told I

have CMT,

> I don't know what type, I don't think it really matters.

>

> I'm 29 and don't have any noticeable wasting of muscles to the

untrained

> eye. My only problems are tremor in the hands and neck and back

pain. People

> with Demylating neuropathy such as CMT can get thickening of the

spinal

> nerves, which run down the center of the spinal cord, and this has

been

> proven to me on an MRI scan. Apparently this is the cause of the

back pain

> and neck pain.

>

> One word of advice Karon don't believe everything you read here

will happen

> to you, some people just think everything that happens or goes

wrong with

> there body must be related to CMT, they may be right they may be

wrong. My

> only advice is to read and learn. Nobody here is really trained in

the

> medical field.

>

> Hopes this helps a bit.

> Todd.

>

>

>

> -----Original Message-----

> From: kedleson [mailto:kedleson@a...]

> Sent: Saturday, December 15, 2001 5:51 PM

> @y...

> Subject: [] New to

>

> Hi Everyone,

>

> I just joined today and wanted everyone to know that I am thrilled

to

> have found such a site. For the past five years I have been

> diagnosed with MS and have been taking injections daily. This past

> July I was told that I didn't have MS afterall! I have CMT. I do

> not know which type and don't know if it is that important to know

> the type. This disease is so new to me.

> My immediate question for now is how common are leg cramps with CMT

> and do others experience back and neck pain due to perhaps their

gait

> problems. I have had horrible back and neck pain for the past

> several years and I think it is because my gait is messed up due to

> very weak feet. I would appreciate any feedback and advice.

Thanks!!

>

> Karon

>

>

>

>

[Guest guest]

Thanks Cyndi for your response. I have got to start drinking water more

often. It seems I am hardly ever thirsty but more and more people are raving

about its rewards.

Happy Holidays!

[Guest guest]

Ditto, ditto, ditto! Well said.