progression

[Guest guest]

Pam, hi,

CMT is more correctly described as a 'syndrome' that affects us all

different according to our unique genetic code. Our families are all

different in genetic makeup now, so our genetic codes are unique, which

is why we all experience different degrees of CMT symptoms.

~ Gretchen

[Guest guest]

Not only that but some of us did not inherit this thing, my dr. knows for a

fact in me that it came sometime after conception and not inherited because it

is not in all my cells only like 17% of them. But it still hit me hard.

Ron

[Guest guest]

--Gretchen,

You make me laugh. the pot and drinking line. I read somewhere that

drinking is hasardous to our health if we have CMT. Duh - maybe b/c

it affects the BALANCE! I'm sorry that was just too funny. Thanks

again.

I was talking to a gentleman from the CMT Association last week. he

had just been at a conference and they discussed the " last axon

standing " I had told him that I had the EMG test done on July 6 and

from the tests done on May 13, 2004, I had not deteriorated much at

all. Basically just lost some feeling in the hands. Other than

that, everything was pretty much the same as just over 2 years ago.

He then explained about the last axon standing. My CMT seems to be

axonal as the speed of the messages is the same, they just don't know

where to go. He said that is typical to have stabilization for a

while and then we see deterioration again. it seems there are

bundles of axons as they die off we don't see the deterioration until

the last axon in the bundle dies and then we decline again.

Stabilize and wait unitl the next group of axons die. Interesting.

I believe that is WHY at 47 (I too am the same age.) I am seeing

decline now, but knowing I have had this my whole life, looking back

I can now " see " things. Yeah, the sprained ankles, the lack of

balance, I never learned to ride a bike, the fear of falling, perhaps

b/c I wasn't really " feeling " what I was walking on? the weird gait

I had and on and on. Ahhhh, hind sight always 20/20!

[Guest guest]

Hello Pam,

Progression in CMT does not depend on what type you have or when you

were diagnosed. CMT is 'slowly' progressive, you will not wake up

tomorrow morning with feet that don't work. I actually was very

afraid of this myself, plus about a million other things associated

with my general fears and stress with living with my childhood

diagnosis. Everytime I got sick (and I mean like a cold, etc) I

thought it was CMT " progression " . It wasn't.

You have previously shared you are newly diagnosed, and I imagine how

difficult that must be in mid-life. Are you currently using AFOs or

custom made othotics in your shoes to help your feet with walking?

You mentioned you take Paxil. Are you by any chance taking any

medications for high cholesterol or others that are known to cause

nerve damage? I ask this, because sometimes additional medications

can cause aggravated symtoms. Do you have a copy of the CMT

Medications Alert?

Now, about stress, fear and depression: in my experience, all can

interfere with CMT, and seemingly made my CMT seem to take a dive.

Once I nailed the stress, fear and depression, I had a 180 degree

turnaround.

There is much to be said for following a heart-healthy diet and

nutritional plan, as well as getting good sleep at night to manage

CMT symptoms. I think awhile back we were talking about experiencing

symptoms in mid-life, and what exactly is age-related, and what is

CMT relalted. Of course, there is overlap, but I encourage you to

take very good care of yourself in all areas of life right now, and

if you need help with your feet, get to an orthopedist, then to an

orthotist he/she can recommend. Becoming pro-active about CMT and

learning more about it will greatly reduce your fear and stress.

Did you get the booklet from HNF about CMT, or Paolo Vinci's book

about the 7 stages, or the new book/CD from CMT UK? All of these

resources will help you better understand the workings of CMT.

~ Gretchen

Life is a dance, if you know the steps.