Re: High roof of mouth CMT related or not?

[Guest guest]

I honestly don't know if the roof of the mouth being so high is CMT

related however it got a doctor into action to do the genetic

testing with my son, this is a whole new ball game to me.

Is anyone else out there the same via not being able to walk at all the next day

after high impact excercise or a long time on their feet?

Tomorrow my son will be doing his bike ride again with the school

and i know on wednesday he will lose the usage of his legs and the

pain will be back....he describes it as numbness until he he tries

to stand then it goes to pain.Around midday the feeling comes back

to his toes an then by around 2pm in the afternoon he is able to

walk again.

He is unable to get on his heels what so ever and normally in the mornings he

walks like what could best be described as a penguin. We have some success with

tonic water via any pain which we step up in the warmer months as things are

more prominent then.Also his body to touch is always warm and his skin is so

tight..like not pinchable anywhere.Headaches especially waking with them have

been an issue as well.

Lesley

[Guest guest]

Hi Lesley,

After years and years of having CMT and only having the high palate

mentioned once and never reading anything on any CMT sites my best guess would

be that a high roof of the mouth is not related to CMT, but like you said as

long as someone took notice and is helping your son it is a good thing. I am

going to keep looking for literature on the theory - it has peaked my curiosity.

After a lot of exercise it is perfectly normal for CMT weakness to be worse.

Pain and stiffness is also very common. The degree of the pain, weakness and

stiffness would depend on the individual person.

Once I mentioned that we had a trampoline to our specialist. He warned me about

the extra weakness after my CMT kids jumped on our trampoline. He wanted them to

be extra safe. Well actually he wanted me to get rid of the trampoline.

As a Mom with CMT and 3 CMT kids I would say your son's reaction to the over use

of his muscles is severe. If my kids had this reaction I would try to pace

their activity. Until he figured it out for himself.

I used to swim as a kid, I was in darn good shape. When I was in my 20's it took

so much strength to swim that I could hardly pull myself out of the water. I had

to really pace myself and not swim for to long until I had more endurance.

Over working a CMT muscle is not good. I was told when I was little that it

would exaggerate my CMT. I am not sure if that still holds water but for me when

I am that over worked and that weak I could really hurt myself. Last April it

took me three days of recovery to get over a trip to Disneyland

[Guest guest]

Lesley,

This is in answer to your query about a high palate and CMT. I was born with a

high palate but didn't know about CMT until diagnosis at 50. Don't know if it

is a trait of CMT....interesting tho.

Sharon

---------------------------------

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

>

> Hi Lesley,

> I was told by a doctor that worked for social security that I had

a high

> palate in my mouth because I had CMT.

> I asked my real CMT neurologist if I had a high palate, he looked

in my

> mouth and said my palate was normal.

> I have never had a doctor before that or since then ever relate a

high

> palate to CMT.

> But the high palate rumor had to start somewhere so I assume it

is in some

> absurd medical journal somewhere.

>

>

>

>