My introduction

[Guest guest]

Hello everyone. I'm a parent of a 15yr. old son who has CMT but not identified.

(CMT1 was genetically ruled out) He has been diagnosed since he was 10yrs. old.

He has pes cavus feet, extreme fatigue, & alot of the other CMT symptoms except

he has no weakness in his legs or arms, which always seems to amaze his many

doctors.

He has been experiencing chronic pain. Mobility is an issue, especially walking

around the school campus. Has anyone found anything that works for them to

relieve pain? We are looking for alternative methods to Rx's since none of his

doctors suggest that route. Thanks.

Bkjmsa

[Guest guest]

Hello and welcome. My son, now 17, was diagnosed at age 9 with a CMT variant.

His fatigue is overwhelming, and the pain is just ridiculous. He legs are

classic CMT in shape, but his weakness is minimal. It sounds similar to your son

in many ways.

We tried everything for pain that was non-prescription,plus physical therapy,

occupational therapy, aquatic therapy and unfortunately, he is now on Gabapentin

(neurontin) and Cymbalta and is managing pretty well. For severe muscle spasms

which he gets regularly, he takes Zanaflex. We hate all the drugs as well, but

it beats the heck out of having him suffer needlessly. It took 3 years to get

the dosages right beause of his growth spurts. I think we have balanced out for

a while.

He does have a wheelchair he uses to minimize fatigue when he is able to go to

school, however, he is now on Hospital Homebound and will not return to campus

this year. He's had heel cord surgeries twice and bilater osteotomies to correct

his feet.

While no one wants to go the drug route, sometimes there are no alternatives if

we want to lead more productive and pain free lives. Massage was effective for a

while. Accupuncture was something he wouldn't consider and there are mixed

opinions about it's effectiveness with CMT.

If you do find an alternative that works I would love to know! Best of luck.

>

> Hello everyone. I'm a parent of a 15yr. old son who has CMT but not

identified. (CMT1 was genetically ruled out) He has been diagnosed since he was

10yrs. old. He has pes cavus feet, extreme fatigue, & alot of the other CMT

symptoms except he has no weakness in his legs or arms, which always seems to

amaze his many doctors.

>

> He has been experiencing chronic pain. Mobility is an issue, especially

walking around the school campus. Has anyone found anything that works for them

to relieve pain? We are looking for alternative methods to Rx's since none of

his doctors suggest that route. Thanks.

>

> Bkjmsa

>