Information Needed

[Guest guest]

I am enjoying all the inspiration messages that have been written on

this site. I have learned so much about CMT and know that I will be

learning more as the time goes on. I did read something about

wearing ribbons in July. How do I do that and how do I find out more

about it? I also at times will get severe burning of my feet--it

feel as though I should put them in a bucket of cold water to cool

them off. I do not wear AFO's but because of this site have found a

place to purchase New Balance sneakers and a dress shoe also that has

the roll bar in them. I tried them on and they are wonderful. My

feet and legs feel so springy in them. Of course they are expensive,

so I have just been able to order them--without you all, I would not

have known anything about these.

I believe that my eleven year old

son is having a problem with CMT and have to take him to his

pediatrician so that he can be referred to ??? do I go to a

neurologist or someone else??? He plays basketball, but is having a

lot of issue with his Achilles tendon and when he runs, I have

noticed that he slaps his foot and often has trouble jumping. His

balance appears to be OK but his heels are the issue.

I also thought that the twitching wasn't something that was part of

this syndrome but from some of the things that you all have

indicated, it is something that happens also. I wish I had known

more about CMT and vaccines when my children were younger. I am also

trying to get my father to get a DNA test done so that we can find

out what type of CMT he and I have. That is all I have to comment on

and hope that someone will answer the questions that I have asked.