Re: Plateaus + Hands

[Guest guest]

<< What I really would like feedback about is whether or not there are others

among you who have experienced the sort of extended " progression-free "

periods of time I have had and if there are others who have had only affected

feet and legs...? >>

They are often referred to as plateaus, and if you don't get into an accident

or have any other sort of serious stress/trauma it may last for many years.

There is no way to predict an individual's progression, so enjoy it and drive

carefully.

Whether or not your hands will be affected, or affected very much, may depend

on many factors, and no one can predict that, either. If you don't have a

repetitive stress type job perhaps your hands will be spared. No one can know

for certain.

CMTers offer an infinite variety of experiences and life stories.

This is what I've learned. Others may have different ideas. I'm always

learning.

Kat in Seattle

[Guest guest]

<< What I really would like feedback about is whether or not there are others

among you who have experienced the sort of extended " progression-free "

periods of time I have had and if there are others who have had only affected

feet and legs...? >>

They are often referred to as plateaus, and if you don't get into an accident

or have any other sort of serious stress/trauma it may last for many years.

There is no way to predict an individual's progression, so enjoy it and drive

carefully.

Whether or not your hands will be affected, or affected very much, may depend

on many factors, and no one can predict that, either. If you don't have a

repetitive stress type job perhaps your hands will be spared. No one can know

for certain.

CMTers offer an infinite variety of experiences and life stories.

This is what I've learned. Others may have different ideas. I'm always

learning.

Kat in Seattle

[Guest guest]

Yes, Kat, you are right about the accident thing. In '94, I fell and broke

my hip (upsetting at 35 years old), and then went thru an agonizing and

ridiculous year. My hip never healed (vascular necrosis) and the initially

placed screws had to come out and the hip was replaced.

Unfortunately, I had an ortho-surgeon who was very inexperienced with the

realities of CMT. It took many months for him to believe that the first

surgery was not working (he thought I was complaining of incredible pain and

spasms - which typically lasted for 30-45 minutes - to get pain-killers). I

finally wound up at Mass General in Boston (I lived in Massachusetts then)

and they realized that my hip bone was gone and I did in fact need a hip

replacement. My pain was valid.

Anyway, when I had the replacement and went to a rehab hospital, they could

not get the muscles on my left leg to work at all, aside from spasming. Very

scary time. I was confined to a wheelchair for almost two years. I had

always been very independent and I found myself very helpless. It was a big

setback. But I fought and fought, got the use of the muscles back, and am

nearly back to where I was.

So after a very long story, I will say that I am very careful these days!!

Peace,

Marc in Blocksburg, CA