Re: New things to deal with

[Guest guest]

Lynn,

I was diagnosed 6 years ago. Within the last 18 months, I've gone from a cane

to a walker to now ordering a motorized wheelchair. Everybody progresses at a

different rate. Make sure you hook up with a good neurologist who will track

your progress. Good luck.

Jeanne

[Guest guest]

Hi Lynn,

 

It is possible for the progression to happen at different speeds, even within

one's own life.  Sometimes things can progress more rapidly, other times things

can plateau for awhile.  I experienced this in my life and it may be the case

with you.

 

However, given that your diagnosis was only a year ago, it's also possible that

you are paying more attention to things that you may have turned out before. 

This was a phenomenon I experienced when I first got my diagnosis about four

years ago.

 

I had always had pain and weakness, but I was very adept at tuning things out. 

When I first got my diagnosis, I began to pay more attention to things.  When

paying more attention, watching for signs of progression, I noticed more

things.  And, since the diagnosis was new, there was fear associated with the

new things I noticed.

 

After awhile, I learned not to worry so much, since wasn't healthy for me.  I

decided to go back to my original  " tuning out " technique, which allows me

to stay more positive and have better pain control.

 

I think it takes some time after getting a diagnosis, to get to know yourself

and the disease and to figure out the best ways to cope.  I also agree it's

important to maintain a relationship with a trusted neurologist, so he/she can

track your progression.  Sometimes just telling the doctor what's going on and

getting a " that's normal " response is really helpful in reducing the worry.

 

From: togglebmb <togglebmb@...>

Subject: New things to deal with

Date: Monday, October 12, 2009, 2:44 PM

 

I was diagnosed with CMT about a year ago. It was kind of a shock to get this

diagnosis at my age (50). Anyway, I've been learning to deal with it, have a

brace because I can't control my left foot at all and walk without a brace.

Lately I've been experiencing a lot of tingling in different areas of my

fingers, toes, legs, etc. and I've had a lot of weakness in my other leg, the

one I'm not having to wear the ankle brace on. I was just wondering if anyone

else has had any issues like these, especially with the weakness/numb feeling.

Is it possible things are getting worse quickly? Thanks for any feedback, it's

nice to know I'm not alone in this!

Lynn