Re: Tests to determine CMT

March 6, 2001

Marta,

It sounds like you are referring to an NCV (nerve conduction velocity test).

This is the one done with electrodes. An EMG (sometimes called muscle wave)

is where they stick tiny needles in and then measure the reaction. I think

most of us have at least had the NCV.

Lamar

----- Original Message -----

From: martalynn@...

Sent: Tuesday, March 06, 2001 12:51 AM

Subject: [] Tests to determine CMT

CMT Group,

How did all of you find out about your CMT? Did you get a blood

test because you knew of another member in your family that had been

diagnosed? Well, after seeing the neurologist at Children's Hospital

he had an appointment for us to get a blood test and an

electsonogram? (eh, not too sure it's called something like that).

It's where they use electrical currents to determine how severly your

nerves had been affected. It was that or they said if the test didn't

narrow down what our problem was they would have to start needle

poking. I'm not fond of needle poking, so I thought that this would

be better since they weren't. Ah, not fun. Not awful, but I don't

like feeling my whole arm jump when they turn up the voltage. I

almost cried when he said he'd have to turn it up even more to get a

better reading. He actually was not only able to find out that indeed

we did have CMT, but I guess my case is worse then my mother's. Any

of you taken the same test?

- Marta

March 6, 2001

In a message dated 3/6/2001 12:53:26 AM Eastern Standard Time,

martalynn@... writes:

<< He actually was not only able to find out that indeed

we did have CMT, but I guess my case is worse then my mother's. Any

of you taken the same test?

>>

Marta

In Jan I have both the NCV and EMG done on my left leg, since it has really

been hurting me for the past year. He had to shock me so hard, several times,

I thought my foot was gonna kick him. I was near tears, had to fight it off.

The EMG [muscle test] wasn't so bad. It shows lots of weakness. But it didn't

hurt too badly. Have you got bruises anywhere from the shocks. I had them on

my lower leg really bad.

March 6, 2001

Hi Marta,

I found out that I had CMT through an EMG (nerve conduction). My mother had

to have brain surgery (unrelated to CMT) and it was at that time she was

diagnosed with CMT. My sister and I then went and had EMG's. My mother is

now 71, my sister is 45, and I am 41. I was 35 years old when I was

clinically diagnosed. Of the three, I am the worst according to the EMG's.

Growing up, we had some difficulties running, climbing stairs and we had the

" funny looking " feet (high arches).

I agree with you EMG's are not too much fun!!! Take care and keep

participating in the group.

----- Original Message -----

From: <martalynn@...>

< >

Sent: Monday, March 05, 2001 11:51 PM

Subject: [] Tests to determine CMT

> CMT Group,

>

> How did all of you find out about your CMT? Did you get a blood

> test because you knew of another member in your family that had been

> diagnosed? Well, after seeing the neurologist at Children's Hospital

> he had an appointment for us to get a blood test and an

> electsonogram? (eh, not too sure it's called something like that).

> It's where they use electrical currents to determine how severly your

> nerves had been affected. It was that or they said if the test didn't

> narrow down what our problem was they would have to start needle

> poking. I'm not fond of needle poking, so I thought that this would

> be better since they weren't. Ah, not fun. Not awful, but I don't

> like feeling my whole arm jump when they turn up the voltage. I

> almost cried when he said he'd have to turn it up even more to get a

> better reading. He actually was not only able to find out that indeed

> we did have CMT, but I guess my case is worse then my mother's. Any

> of you taken the same test?

>

> - Marta

>

March 6, 2001

In a message dated 3/6/01 12:53:29 AM Eastern Standard Time,

martalynn@... writes:

<< How did all of you find out about your CMT >>

At 45yr young I had an NCV test, more out of curiosity then anything. One

of the people I was working with was neurologist. He noticed I had a problem

and he ask what it was and I told him I didn't know. So he suggested I go to

another neurologist for testing. The second time it was verified, my

granddaughter had a blood test.

E

March 6, 2001

i took the same test. i found it painful when they put the electrodes on my

arm because i often get pinched nerves there, and the electrodes increased

the pain. i have had EMG studies done as well as several blood samples

taken and the results are normal so far, but the next step is a muscle

biopsy and I'd rather not resort to that.

-Ashleigh

>From: martalynn@...

>Reply-

>

>Subject: [] Tests to determine CMT

>Date: Tue, 06 Mar 2001 05:51:33 -0000

>

>CMT Group,

>

> How did all of you find out about your CMT? Did you get a blood

>test because you knew of another member in your family that had been

>diagnosed? Well, after seeing the neurologist at Children's Hospital

>he had an appointment for us to get a blood test and an

>electsonogram? (eh, not too sure it's called something like that).

>It's where they use electrical currents to determine how severly your

>nerves had been affected. It was that or they said if the test didn't

>narrow down what our problem was they would have to start needle

>poking. I'm not fond of needle poking, so I thought that this would

>be better since they weren't. Ah, not fun. Not awful, but I don't

>like feeling my whole arm jump when they turn up the voltage. I

>almost cried when he said he'd have to turn it up even more to get a

>better reading. He actually was not only able to find out that indeed

>we did have CMT, but I guess my case is worse then my mother's. Any

>of you taken the same test?

>

> - Marta

>

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March 7, 2001

Hi Marta and the group,

This can be of interest and shed light on why CMT is under Dx'd. I had

symtoms for 59 years and a toe operation before getting dangerous by

dropping tools from a scaffolding (and nearly myself.) Went to my PCP who

directed me to a Neuro-doc with a good memory. He took 15 minutes to find a

report on CMT that he remembered in his files. The rest was and is

history. - EdM

-----Original Message-----

From: martalynn@... <martalynn@...>

< >

Date: Tuesday, March 06, 2001 12:51 AM