Re: Having trouble accepting this Dx

[Guest guest]

Hi Gigi!

I think we all need to " rant " sometimes. ) It helps to get our

frustrations, sadness and fear out of the system. It is so good to

write to other CMT'ers that really do understand.

Your message made me think of my first (wrong) diagnosis. I was

diagnosed in Norway, to have " Dejerine Sottas " syndrome, a rare form

of CMT. I believed for many years, that this is what I suffered from.

I was told that it could only be passed on to girls and that if I

were to have a son, he would not be affected. After moving to England, my new

neurologist questioned this diagnosis right away. He said that unless my

parents were closely related, he did not think that it could be Dejerine Sottas.

He sent more samples for genetic testing. The result came back as CMT, type 1A.

(All the women in my family suffer from this, late grandma, my mum and two

sisters). I was then told that it is a 50/50 chance for ANY of my children to

inherit it. Depending on if they inherited one particular chromosome from me or

from my husband. This made up my mind not to have any children.

Another reason for not having any, is my constant extreme fatigue.

I thought I'd tell you this, just in case there could be a

mis-diagnosis for you as well.

I've had several operations in both my feet, to fuse the ankles and

straighten my heels. These operations were done in childhood/teenage

years and were of great help for many years. Four years ago, I had

tendon transfers twice in my right hand, to get better use of my hand.

This has also been of great help. (Although it hasn't made my hand

any stronger, it is much more useful, and has made it so much easier

to hold a pen.)

It is hard to accept this illness, I know. My experience is, that I fight for a

long while, whenever I feel the illness has progressed. When I finally accept

it (what else can we do?) - then I start to look for help and solutions which

makes life so much easier.

I'm 45 now and recently I've struggled to accept that my AFOs are not enough any

longer, but as soon as I did accept that, I

could see new hope, and I'm in the middle of the process to get custom made

splints, that if I'm lucky, will make me walk for many more years. Any help

aids makes life that much easier and stops us from using all our energy for the

simplest little tasks.

I think fear and pride pop up now and again and I have to look at myself and try

to switch over to positive thinking. Believe me, I also find it very hard

sometimes. The fatigue is the biggest problem, but we can make it that little

bit easier for ourselves, by accepting all the help we can get.

Best wishes to you,

Nina