Re: Difference between CMT and MD

[Guest guest]

Gretchen,

I truly was NOT asking that in a spirit of disrespect, or even in disagreeing

that accurate communication is always preferable. Why is CMT contained under the

MDA umbrella? How is it similar to and different from muscular dystrophies? Why

would it be important for the man-in-the-street to know the distinction? (Again,

I am not challenging or asserting that the distinction is invalid... I just need

help to understand that better.)

Peace,

Lynna

[Guest guest]

Hello All,

Interesting topic. When I was a a teenager, I did describe it this way, and the

reason was that MDA was the organization at the time which dealt with CMT, as

the MDA adopted CMT as one of the circa 80 diseases it covered.

This reference was not inappropriate considering...

MDA provided my first firm diagnosis in 1979 at the MDA clinic at the University

of Utah, and subsequent diagnoses and documentation (doctor's notes when

necessary) from the MDA clinic at the Univ. of Hawaii. (Even at 21 these doctors

were astonished at how much I already knew.)

MDA paid for my first set of braces, which I obtained at age 13, after the MDA

clinic at the U of U measured for them and the MDA physician gave the order for

them.

There was little " internet " data until post 1996.

Now I am my own expert on CMT, thanks in part to explanations of my disease

published and circulated by the MD Association, and I don't have to refer to it

that way. I can explain what it is. So I no longer refer to it as, " a form on

muscular dystrophy.

But I now refer to it as " being like MS, " which I have stopped doing only when

presenting this topic to women I would like to date, as MS invokes some extreme

associations like severe disability and death.

But otherwise, MS is a demyelinating disease, as is CMT. One uses these

shortcuts because, although I am prepared to explain CMT into the smallest

details, most people would like a quick reference to something they already

understand, rather than a lecture on CMT.

If I am introducing the subject in an email, for example, I skip my own

explanation and say, if you wish you learn more about it, and then I refer to a

CMT website, and I concentrate on how it affects my life, rather than on

explaining what it is.

[Guest guest]

When people ask what I have, I say  " a progressive neuromuscular disease as one

of many neuromuscular diseases covered under the umbrella of Muscular Dystropy,

but it is more similar to MS because it affects the nerves directly in the

peripheral system as opposed to the central nervous system like MS does " .

Most of my friends think I have MS and I only correct them when they say it to

me. Otherwise just let it go!

Jackie