Why aren't more M.D.'s interested in CMT

[Guest guest]

,

Good question - I have wondered about this for years myself. There is SO much

focus on ALS, Parkinson's, MS and Alzheimer's right now. That's where the money

is. Sad to say that money is the motive. It is more like doctors are into greed

instead of need to help us.

In the last 10 years great strides have been made in CMT research and now that

we (with CMT) have made a dent in awareness, I am hopeful more strides will be

made.

I've had to educate my Internists about CMT - they open a book and read what it

says, and voila, try to put me into a " category " . But that doesn't work. Even

with my last EMG/NCV the neurologist said because of my results, I do not have a

" demylenating " type, but is more neuronal (axonal) in nature. I mean how

specific is that? And he has 30 years of experience! A few years ago, Cornell

Med. School added CMT to their neurology curriculum, but I think in most medical

schools, CMT is lumped into neuropathies, and left at that.

The last neurologist I saw was in 2001, he asked if I wanted to be DNA tested. I

said " sure, but the tests haven't been invented for Type 2 yet " ! After he read

the EMG/NCV report and examined me, he concluded that the EMG/NCV report was

the best diagnosis I could get! I was LOL all the way home.

Just to show you that here in Calif., there are M.D.'s who don't know, and then

there are those who confuse CMT with Charcot foot too! But then my spinal

orthopedist knew from day one about CMT - enough to examine me, ask questions of

how I am affected, check the " absent reflexes " , watch me walk, examine my

orthotics and shoes, and let me know my back problems were not CMT related.

When I learned that MDA has a 2 million dollar budget for the next 3 years of

CMT research, I cringed. That doesn't say much about the URGENT NEED for

expanded CMT research. What CMT research needs is an infusion of funds... I only

wish I knew Trump or other philanthropists whom I could contact on behalf

of CMT.

Hang in there!

Gretchen

[Guest guest]

Gretchen,

How about contacting Alfred Mann??? He infuses millions of $$$ for

medical/scientific research and is always looking into new projects.

I have spoken to Yitzhak Zilberman, the president of Bioness (who is

a personal friend of ours) and the first question he asked was...

how many are affected (so $$$ signs ARE the main consideration and

Alfred Mann is a businessman with a mission).

You have so much knowledge you can share. I couldn't come close to

making a decent presentation.

Are you game???

Shula