Re: No diagnosis, just family history and symptoms

[Guest guest]

Swimmer,

The appointment with the neurologist is definitely the best first step to

take, particularly if he is aware of CMT and its problems, symptoms. It took me

about 2 years to get diagnosed during which time I had lots of tests as there

has been no one else in the family with the problem/symptoms. Your family

problems/symptoms certainly sound pertinent to DX of CMT. I had high arches for

all my life, and weak ankles, other than that, nothing spectacular but for a

little weakness in my arms now and then.

Don't get discouraged, keep a positive outlook.

Blessings,

P.

[Guest guest]

I was mis diagnosed several times before I got the right diagnosis. I walked

into a neurologist office for a EMG that my orthopedic had ordered out of

frustration trying to find the answer. The neurologist took one look at m feet

then had me walk and said you have CMT. The EMG test confirmed this. I was

told all this was in my head and I really thought at one point that I was losing

my mind. Hang in there someone will recognize what you have especially if

the history is there. Cathleen in Arkansas

[Guest guest]

In a message dated 8/11/2003 9:11:46 AM Pacific Daylight Time, mmmmen@...

writes:

> is often the case

> before a diagnosis is made or were most of you diagnosed easily

> right away?

It took years for me to get the diagnosis of CMT.

[Guest guest]

Swimmer,

My sister, older than me by eleven years, suffered most of her

life without knowing what exactly was wrong with her. She had

very bad balance, the tiny badly shaped feet, was regularly

dislocating her kneecaps and was constantly falling. She used

a walking stick, then a walking frame and finally a wheelchair

and her doctors still could not tell her what exactly her

problem was.She had her kneecap removed but they then discovered

that there was no muscle strong enough to adapt to an artifical

one. It was then that she was seen by a neurologist who could

tell her almost immediately that she had CMT. We had never

heard of it but I knew myself that this was what I also had. I

did not have as bad a time in my younger years as my sister but

I did have most of the symptoms. I was diagnosed three years

ago and have the benefit of knowing that I need to keep my

weight down and keep myself as mobile as possible. Also I find

the support of groups like terrific. We thought we were

the only people with this condition and that we would never

find anyone that really understood what we were going through.

My advice to you is to insist that your doctors listen to you

and get all the information you can. I wish you well.

Eileen in Ireland.

[Guest guest]

Hi,this is so good to hear, because my daughter is 23 and has a

terrible time with her knees dislocating all the time. She has

deformed feet but have never seen a neurologist. Is that a

good idea to get with one?

Thanks. Elaine

[Guest guest]

Dear Swimmer,

Boston you are huh? that is where I am from.. My daughter was

diagnosed when she was 17 )now 23) because she was having

problems with her kneecaps staying in place, and foot deformity

too. I had never heard of CMT but now am glad that at least I

know what we have. I, nor she, have ever been to a neurologist

and perhaps that is a good idea. Please keep in touch.

Elaine

For a look at Rehabilitation Management of CMT, try this book

http://www.aicmt.org/books.htm