Re: CMTUS: Introduction

[Guest guest]

> Hello All,

> My name is Jeannine and I live in Kingston, New York. Thank

you ,

> for recently inviting me to join the list. I used to chat on

another CMT list

> but I stopped using it and found myself so needing to chat w/other

CMT

> sufferers as my symptoms appear to be getting worse. I am 42 yrs

old and was

> diagnosed w/CMT about a year ago. I live in a small city in New

York where

> the Drs. are not very familiar w/CMT;so needless to say I have had

my share

> of various diagnoses until a DR in Albany, NY did a blood test of

my DNA

> which revealed the CMT. Recently my Mom and sister have both been

tested

> positive for CMT. Its a relief to finally have a name for what has

been

> troubling me all my life.

> My neurologist in Albany who is supposed to be a CMT expert

says I have a

> mild case. However in the past year; I have lost the muscle

strength in my

> thumbs and left big toe which make putting on shoes or zipping and

tying

> things a chore. I constantly trip over my toes, my knees are always

giving

> out on me and now my throat muscles are affected. I had a video

esophalogram

> which revealed the muscles in my throat are getting weaker causing

any food

> or fluids I put into my mouth to go down my throat before I

swallow which

> causes me to choke. I even occass. have times where I am unable to

swallow

> the saliva in my mouth which makes me feel like I am about to

choke. That is

> a scary one esp. when it happens while driving. So I carry water

w/me most of

> the time. The rapidly progressing weakness, severe fatigue and

constant pain

> in all 4 extremities have made me a prisoner in my own home. Yet my

DR says

> this is a mild case. Wow, would I hate to have CMT that isn't so

mild if this

> is what mild is like. I cry and I laugh a lot. I try to find humor

in this

> when I can. It is so lonely when one is barely able to walk.

> Does anyone know of any hospitals or clinics in New York which

specialize

> in CMT? My Dr.'s seem to feel that all of the problems that I

listed above

> are not connected to CMT they say I probably have something else

going on yet

> all other tests are negative. The Dr who diagnosed the CMT says the

CMT

> should not cause me pain and IF I really am in pain it must be from

something

> else. LOL.........So he prescribed Dilantin which I did not take as

I heard

> it is a drug we should avoid. So when I go to a Dr. to notify him

of a new

> complication which I know is caused by the CMT he says the same

thing with no

> sympathy whatsoever, " Well you know there is no cure for CMT and I

have

> patients who lead active productive lives and are working and

involved in

> sports; I don't know why you are having such a hard time, you need

to

> exercise more. " These comments and comments from my church saying I

must have

> caused the illness or its serving me a useful purpose as they laid

hands on

> me and I should be healed; has sunken me into a state of

depression; where I

> cut myself off entirely from the world. Any suggestions or names of

Cmt

> hospitals would be greatly appreciated.

> Jeannine

Hello Jeannine!

I am also new here and happy to have found this page.

My name is Nina, I am a 37 year old Norwegian girl, married to an

Englishman. We are living in South-West England.

I was born with CMT type 3 (Dejerine Sottas). My late granma, my mum

and my two sisters (twins) also suffer from the same illness.

I can really sympathise with you. I can hardly walk outside, because

I fall all the time. I'm O.K. if I have somebody to hold on to,

but only for a short distance. My hands have the last five years or

so gone gradually worse. It is only my index-fingers I can still use,

so tasks like writing and buttons etc. are more or less impossible.

But I still find the fatigue the absolutely most difficult thing to

live with. (I feel over-tired every day when I wake up!) This

probably sounds very negative, I don't mean to bee. I am grateful

that my Norwegian doctor have retired me and I have a kind,

understandind husband, so thankfully I can plan most days after how I

feel. But I also feel a bit isolated, I can't make any

arrangements " up front " - because I never know if it is going to be

a " good " day or a bad day. I have chosen not to have any children.

I would have loved to, but I am just not strong enough, and my type

of CMT can not be checked out in a blood-test. So both my sisters an

I will not carry this illness further.

I also have pain almost every day. It might not be the CMT itself,

that causes this, but our struggeling way of carrying ourself.

I have had many operations in my feet in my younger days, and that

did help the shape of my foot etc. but of course, it didn't make me

feel any stronger.

It is so nice to be able to " chat " with people in the same situation

as me, this is the first time I have ever been in contact with other

CMT'ers outside my family. Thank you all and ecpesially thanks to

Gretchen who made me aware of this forum.

Hope to hear from you Jeannine! Best wishes, Nina Cat.