Re: What is meant by 'mild CMT'

[Guest guest]

A few thoughts come to mind about your question, Gretchen. I think much of my

response has to do with different perspectives. Until 2 years ago, I

thought everything I was experiencing physically and mentally had to do with

stress, depression, not enough discipline/ambition, etc. To discover

that much of what I've experienced ALL my life is a result of CMT -- and more

recently additional diagnoses of Narcolepsy and Sleep Apnea -- has

been a relief as well as a challenge. At least now I know what I'm dealing

with. In some ways, I look at my having CMT as a 'mild' disability;

that is, I can still walk, work full time, drive, play with my dog, bike, canoe,

woodwork, garden, volunteer, etc. (Those who can no longer walk,

of course, may see this differently). In other ways, though, I do see it as a

'serious' disability for me. Literally every aspect of my life is

affected (contrary to what aquaintenances may think they see -- and even some

who know me well). Every day I struggle to get up in the morning.

Every day I am exhausted by 2:00 or 4:30 or ? (The unpredictability can be

maddening, too!) Every day some of the first casualties of my fatigue

are my sense of humor and patience. Depression can easily tag along, too.

Every day I realize that my plans for what I want to do, and need to do,

are falling further and further behind. As for medical professionals using the

term 'mild'; the two neurologists I see at the MDA clinic have never

used the term (or any other similar word) in my recollection. The neurologist

at a private practice who did the sleep study stated to his assistant

who asked what CMT is, " It's no big deal " , and " it won't get any worse " .

Perhaps he has not kept up with the ongoing research about CMT as he is

near retirement age. In any case, I disregarded his comments as being based on

ignorance about this branch of neurology. As many have stated here,

WE know what we experience..

Mark T Fulton

" In a full heart there is room for everything, and in an empty heart there is

room for nothing. " Porchia

[Guest guest]

Hi Mark:

I can surely relate to what you have just written, and your use of the word

" mild " from a purely physical/disability standpoint. Until I was diagnosed,

I too thought everything I was experiencing physically and mentally had to

do with stress, depression, lack of ambition/discipline, etc. I was also

getting very frustrated with the medical profession. I felt like used car,

and the final diagnosis was the result of " elimination " . I was tired all the

time, I was dizzy and lost my balance all the time, and I had pains/numbness

in my fingers and toes.

From February of 1998 to November of 2000 when genetic tests verified that I

had CMT1A, I was treated for and/or thought to have had:

* tubes in my ears 2 times.

* 2 sinus operations

* 2 angiograms and 1 angioplasty to unclog 2 blocked arteries

* " maybe it's meniere's disease " .....wrong

* " maybe it's labrynthitis " .....wrong

* " it must be arthritis " .....wrong

* countless types of anti-inflammatory meds.....did not work

* different types of anti-depressants.....a little success

* different types of pain meds.....not the proper type like Gabapentin.

Thank God I was finally referred to a neurologist who took one look at my

feet, and thought I must have CMT. The high arches and numbness in my toes

and fingers triggered him right away. Once I was diagnosed, my family

doctor's exact words were, " that sure explains a lot of things, not

everything, but a lot of things " . As you said, it sure does come as somewhat

of a relief when you know what you are dealing with.

And like you, I am now 54 years old, and I can still walk, work full-time,

drive, golf occasionally, and do other physical activities. However, I saw

my neurologist last week, and we agree that I am losing strength, especially

in my hands. It also hurts my finger tips just to type. As we all know, CMT

is a progressive disease which affects us all differently, but none the less

we all have CMT and care indeed share with each other.

I thank you for sharing with us Mark, I could surely relate.

Kindest regards,

Beckingham

Corporate Nice Guy