my introduction

[Guest guest]

I am a 38 year old male and was diagnosed with CMT about 2 years ago. My

complaint was having extremely cold feet, even in the summer. After going to a

local neurologist ( who diagnosed me after a nerve conduction test was performed

in both legs), and then to a neuro at Vanderbilt in Nashville ( who conducted

their own test ), I definitely have it. I have not had any blood work done yet

to find out what type I am. I am married and have 2 kids, ages 6 & 9. We don't

have any suspicions so far about them having it. We are extremely worried about

them though because we have read the statistics. I exercise daily and eat

healthy (I have since highschool). I show no outwardly appearances of having

CMT. I lift weights and can jog a few miles non-stop. I am a school teacher,

so I am on my feet alot. About 4 weeks ago, I started experiencing excruciating

lower back pain. For the past 13 years I have taken amitryptiline and

wellbutrin for problems unrelated to CMT. Now I'm thinking my symptoms must

have been masked from those meds. Other than wearing footwarmers in my shoes

($1/day), I have taken nothing else for my CMT....still taking the amitriptyline

and wellbutrin though. But now, with these awful backpains, I started taking

Tramadol and Lyrica about 3 weeks ago. I feel like the Lyrica is helping, but

I'm still having breakthrough pain in my lower back. My neuro wants me to give

the Lyrica (300 mg daily)2 more weeks to work and get use to it, and continue to

take Tramadol with 2 Tylenol every 6 hours to prevent breakthrough pain, until

hopefully the Lyrica helps. So far, my CMT has been sensory loss with my cold

feet. Last week, I had a nerve conduction test on my arms. The nerves are

going on them too now. The doctor said my motor skills may be affected in the

future. Can anyone tell me what I can expect from here on out? I know every

person is affected differently, but I'm wondering about how long I will be able

to work, if I will have chronic pain, and where is the best place to go for

this? I would appreciate any feedback from others. Thanks.