Introduction

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Hi, my name is Barb and I was just diagnosed with CMT a week ago. I am so happy

to have found this group where I can ask questions and access information about

CMT. I am 52 years old, an American, but am currently living in Pretoria, South

Africa. My symptoms started about 2 months ago- I think. The main symptom is

numbness in my toes and feet, along with less movement in my toes. I have no

pain. My hands also experience tingling- mostly when I am out walking and

swinging them back and forth. They turn a bit darker color and feel tingly.

For awhile I was waking up at night noticing that both hands were numb, even

though I was not laying on top of them. This is what first tipped me off that

there might be a problem. I have also had a few days (sporadic) of weakness in

the grip of my right hand. Today it is okay.

A month ago I went to my neurologist (I also have hemifacial spasm and am

receiving Botox injections from a neurologist- so am very thankful to have

access to specialists here), after first consulting with my GP doctor. He gave

me an EMG and the results showed demylenization and significantly slowed nerve

response. He sent me to his colleague who specializes in nerve diseases. After

examination, she said it was either CIDP or CMT. She ordered a lumbar puncture

which I had last Tuesday. The lumbar puncture was normal, so she said I am

dealing with CMT and it is slowly progressive and there is no treatment or cure.

She suggested I have a nerve biopsy to see exactly what is going on, but since a

biopsy won't affect treatment options (and both our children are adopted), I see

no reason to have one at this time. So I have been on the internet for the past

week trying to find out everything I can about the disorder. My parents did not

have CMT, so it is a bit of a puzzle for me. The other thing I should mention

is that I had these same symptoms (only worse) about 6-8 years ago. I was

living in the Philippines at the time, and went to my neurologist for an EMG. I

can remember him making the same comments about slowed nerve response in all

four extremities. He didn't know what it was at the time (he hoped it wasn't

Guillan Barre), but it went away completely and I totally forgot about it until

it returned many years later.

I will be returning to Minnesota in December for 3 months, and am considering

seeing a specialist there to get a second opinion and perhaps more information

about the condition. Does anyone from Minnesota have any suggestions on

doctors? Is it important for me to know what kind of CMT I am dealing with? I

have been reading about genetic testing on the internet. Is this the only way

to know for sure what type of CMT I might have?

I notice there is lots of information in the files on the website. However,

when I try to access most of them (including the folder- About - I try and

open the individual files and get an error message which says " the file is

unavailable and the link appears broken. " Does anyone know why I can't open the

files?

Well, I'm sure I'll have lots of other questions, but for now I'm just trying to

read everything I can about CMT and not dwell too much on how it may alter my

future.

Blessings,

Barb Bartz

South Africa