Welcome Jeannine

[Guest guest]

Welcome Jeannine, I too was on another list, it didn't suit my needs, so

I started this one. Have you tried any of the MDA clinics? You can go to

http://www.mdausa.org and somewhere in there you can search through 230

MDA clinics for one closest to you. The MDA people know about CMT, even

though CMT is an atropy, not a dystropy.

I am 47, guess I have a mild case of CMT too, whatever that means. For

the pain I have found Elavil (amitriptyline) and more recently Neurontin

(Gabapentin) extremely helpful. Also, ice on my feet will help soothe

them after a busy day. I was originally diaagnosed with CMT when I was

10 years old, later when I was about 14 or 15, had an EMG which

confirmed that. So then I just had to live with it, not knowing anyone

with it, and neurology being a relatively new field of medicine. I

didn't let anything or anyone stop me from achieving goals or dreams.

Shopping on-line is a great thing, saves time and energy. I work as a

writer and enjoy traveling, my garden and my dogs. I have had my share

of unthinking people's thoughts on my condition, I don't play sports,

but I do bike and walk. For as many people on the list, there are many

ways to cope and live positive with CMT. As far as I know, there are no

" experts " on CMT. If I ever come across an " expert " I think I will run

the other way, because in my opinion, those of us that are living with

CMT on a daily basis are " experts " .

As for fatigue, I get plenty of rest and sleep, I also am careful to

pace myself in activities, errands, social obligations, etc. I too have

had hands layed on me - many times. In my opinion, it is unrealistic to

think all will be healed like this. In my own opinion, I believe I have

been 'given' CMT as a gift - to help others.

There are good medications for depression, too. Maybe others on this

list can tell you more.

Gretchen

mocha1060@... wrote:

>

> 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

>

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