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Ruth, this is news to me, are you saying one's childhood EMG/NCV would

stay the same in adulthood, or are you just referring to the 'type' it

diagnoses? It seems to me that IF CMT has progressed, the EMG/NCV would

be different. I wish I had my teenage one to compair last summer's with.

Hindsight is wonderful!

~Gretchen

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Gretchen,

I'm not sure if it would show progression. I have no technical

knowledge about these tests. I was using the common sense logic that

if an EMG or NCV gave enough data to lead to a diagnosis in childhood,

then maybe the doctors could use it as part of the family history to

help make a diagnosis in children of that adult. It couldn't hurt to

have them on hand in any case.

All I know for sure is whenever we have seen a new neurologist, they

have asked me if I had the tests before and if I knew the results.

I knew I had the tests as a child (who could forget them...) but I

could not remember the results. Back then, I didn't know enough to

care about type.

Good question though - I wonder if EMGs/NCVs show progression

throughout the course of a disease??? (Any volunteers to retake the

test to find out?) ;)

Ruth Warren

- In egroups, Gretchen Glick <liliwigg@s...> wrote:

> Ruth, this is news to me, are you saying one's childhood EMG/NCV

would

> stay the same in adulthood, or are you just referring to the 'type'

it

> diagnoses? It seems to me that IF CMT has progressed, the EMG/NCV

would

> be different. I wish I had my teenage one to compair last summer's

with.

> Hindsight is wonderful!

>

> ~Gretchen

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In a message dated 11/16/2000 3:54:22 PM Pacific Standard Time, lls@...

writes:

> They will measure the degree of nerve damage and even though they may have

>

Most of us can feel the progression. When the Dr looked at my 3rd EMG results

he said " Well you are progressing " No kidding I thought!

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In a message dated 11/16/2000 10:55:24 AM Pacific Standard Time,

warrenre@... writes:

> Good question though - I wonder if EMGs/NCVs show progression

> throughout the course of a disease??? (Any volunteers to retake the

> test to find out?) ;)

>

> Ruth Warren

>

>

Been there done that! Yes it shows progression. I have had 3 to many of these

stupid tests.

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In a message dated 11/16/2000 5:54:37 PM Central Standard Time, lls@...

writes:

> Good question though - I wonder if EMGs/NCVs show progression

> throughout the course of a disease??? (Any volunteers to retake the

> test to find out?) ;)

>

C here. Do we really NEED to have any tests to measure progression?

Seriously, we know ourselves and how much we have changed over any given time

period. So, what is the need for testing?

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In a message dated 11/19/2000 12:23:54 AM Pacific Standard Time,

C1520@... writes:

> we know ourselves and how much we have changed over any given time

> period. So, what is the need for testing?

>

>

The need, Well your doctor has a house payment dosen't he? lol

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In a message dated 11/19/2000 8:24:31 PM Central Standard Time,

jacee17@... writes:

> The need, Well your doctor has a house payment dosen't he? lol

>

>

Or maybe a cruise, ski trip, Christmas presents, etc. That's what my husband

always says. C

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In a message dated 11/20/2000 1:31:18 AM Eastern Standard Time,

C1520@... writes:

<< The need, Well your doctor has a house payment dosen't he? lol

> >>

My doctor must have his house paid for, last spring I asked him to do tests

to see how the nerves were, since I was and am having lots of nerve pain. He

said there was no need, it is the CMT. Go figure.

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I have been retested to sense progression at a time when other traumas were

not present. The retest did show some mild changes in ncv and was not as

extensive as the initial survey. The neuro-doc selected sites for the retest

that showed definitive results on the initial tests. They didn't bother with

the EMG as well. - EdM

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

From: C1520@... <C1520@...>

egroups <egroups>

Date: Sunday, November 19, 2000 3:22 AM

Subject: Re: [] Re: EMG/NCV

>In a message dated 11/16/2000 5:54:37 PM Central Standard Time,

lls@...

>writes:

>

>

>> Good question though - I wonder if EMGs/NCVs show progression

>> throughout the course of a disease??? (Any volunteers to retake the

>> test to find out?) ;)

>>

>

> C here. Do we really NEED to have any tests to measure progression?

>Seriously, we know ourselves and how much we have changed over any given

time

>period. So, what is the need for testing?

>

>

>

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In a message dated 11/20/2000 3:10:11 AM Pacific Standard Time,

ktbugg54@... writes:

>

> My doctor must have his house paid for, last spring I asked him to do tests

> to see how the nerves were, since I was and am having lots of nerve pain.

> He

> said there was no need, it is the CMT. Go figure.

>

>

>

What an honest Doctor. He must not have any trips planned either.

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  • 3 years later...
  • 3 years later...
Guest guest

,

Have you asked your neurologist WHY he wants you to have another

EMG/NCV? I had 2 of them in my teens, only much later in life when I

was in my mid-40's or so a doc wanted me to have an 'adult baseline'

EMG/NCV. I had those same horrors as you and was reticent. The test

has improved somewhat, needles are much smaller, and I took a muscle

relaxant before hand.

Gretchen

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Guest guest

,

I have 1A. Once I know what I have like you say. You know what you have. I

will never have another one of thoose. My Dr. is in a teaching hospital. Last

time I saw him he an an intern with him. The exam room had the EMG equipment in

there and I thought they were going to test me. I was all ready with my answer.

When the nurse told me to put a gown on I started freaking in the chair.

EMG is the worst test I have ever had in my life. NEVER EVER AGAIN.

Good luck

Matt

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Guest guest

,

I don't see why you couldn't take a mild anti-anxiety medication before

the testing, as long as you are able to fully cooperate with the tests.

Ask the doctor who will be doing the testing about this.

Gretchen

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Guest guest

,

MDA scheduled an appointment, and not to my knowledge scheduled an EMG test.

If I hadn't asked the right questions before I went in I would have been going

through that awful test. I had that test done 30 years ago, and I wasn't doing

it again! I also had the DNA test done 12 years ago. I have CMT 1A... so why in

the world would they want me to take the EMG test again?

Kay~Seaside Oregon

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Guest guest

Kay,

I think they were CMT curious and wanted to use you as a gunni pig.

In a message dated 7/14/2008 5:26:48 P.M. Pacific Daylight Time,

omega@... writes:

so why in the world would they want me to take the EMG test again?

Kay~Seaside Oregon

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Guest guest

Well EMG/NCV are used for diagnostic purposes. CMT never goes away and

the type never changes. It would be as if someone had been diagnosed

with AIDS and a doctor wanted to test years down the road. It's

pointless.

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Guest guest

Most of us with 1A feel this way! Type 2 doesn't seem to have the pain

during the EMG that 1A does.

***********************

I suspected this might be the case. I had an EMG done to determine which

flavor of CMT I had. Type 2 was diagnosed quickly and I only had to endure

needles for one of my limbs.

Of course that was when the neurologist's PC froze, and he's having to

reboot and muttering " No I don't want to send an error report " . Fortunately he

didn't lose any of the data when that happened.

O

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Guest guest

I have Type 2, and in all three EMGs/NCVs I had pain. All four limbs

were tested each time. (Torture) The only test that's worse than this is a

spinal tap (Horrendous!) - * Both NEVER, EVER AGAIN! *

Gretchen

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