My Introduction

[Guest guest]

Hi,

My name is Jen, I am 32 with two kids, both with movement disorders. One has

Tourette's and the other has Oms from a tumor(neuroblastoma). Due to those

issues, for years I was blown off that everything was stress. I kept thinking I

had arthritis or something. I would hurt for no reason, esp my legs. Last summer

things got really bad, I stopped doing yoga (which I was doing to help the

herniated disc in my neck) because my calves would cramp so bad I could't walk.

The cramp started in my chest so I got checked out again. Everything was fine,

all labs etc.

By September my left arm felt like I hit my elbow all the time and my hand would

shake when I picked up something or set it down. The tremor has continued to get

worse, it is now in my entire left arm, right hand and my neck jerks making my

head wobble. I have had 5 or 6 instances of blurred vision and my left ear is

starting to bother me. My right cheek shakes and the EMG tech noticed I have a

twitch in my right eye. I have a painful pulling in my left jaw. My legs are the

most painful but the tremors in my arms are horrible. I dropped out of school

after four years of going part time.

After seeing several docs who thought I maybe off my rocker, finally I went to a

pain mngmt specialist. I didn't expect a dx, just some meds to help. He noticed

I have high arches/flat feet. They insisted I do another emg of my legs. I had

been tested for everything from syphilis to MS. Mri's, spinal tap etc etc.

Everything was negative. I didn't want to but said fine. The doc kept yelling at

the tech. She is 32, What do you mean you had to fight to get any reading, she

is 32. So, I guess it didn't come out very good.

He said he needs a family history of odd foot problems and I have to take my Dad

to him so he can look at his feet. His family is all gone. I only met one

relative of his my entire life, he has passed on now too.

My sisters have all had some problems. One couldn't play sports when she was

little becasue her ankles hurt. Another has seen a neurologist and rheumatoid

doc because of pain, mostly her ankles. She can't wear gym shoes or anything

with an arch support. The other had carpel tunnel. Two of them had seen a neuro

for electric shock like feelings.

The EMG tech said the doc was looking for something genetic called CMT. I return

with my father for an upper body CMT on Wed.

I am wondering if my story sounds like anyone elses. I know this runs in

families and many know they have it from other family members being diagnosed.

But, are my symptoms consistant with anyones? I have been trying to get a dx

for 8 months. I wonder if he is onto something. My life has profoundly changed

in the last year. My hands make things difficult because of the shaking and I

can't walk through a store without limping by the time I leave and then I hurt

for days. The EMG really messed my legs up. The muscles keep twitching and

rolling, spasming and they hurt. Any words of wisdom?

Thank you,

Jen