Re: NCV/EMG

[Guest guest]

In a message dated 11/19/2001 7:37:57 AM Pacific Standard Time,

sue@... writes:

> Do the results change after a period of time and do the results vary

> according to does them? Or is it a matter of interpretation?

As the CMT progresses the test results will change.

I have had 3 EMG thats enough for my entire life.

[Guest guest]

In a message dated 11/19/2001 8:14:27 AM Pacific Standard Time,

sjcrock@... writes:

> I'm not sure of the test results. But the doctor's are going to have to

> prove to me that it is really medically necessary to repeat the tests for

> me to have another one or to put my children through any of them! I told

> my husband -it just like a torcher chamber! The one I had about five years

> ago, the gal couldn't get any response from the front part of my legs and

> feet so she kept cranking up the dial! I would sure question the medical

> need of another one especially if the doctor already has a set of the

> tests.

My children will not have the EMG.. I have already had the EMGs . The only

reason for my kids to have it is to find out if they have nerve damage. DUH

that's ovbious.

[Guest guest]

In a message dated 11/19/2001 8:25:47 AM Pacific Standard Time,

sue@... writes:

> Jane you're absolutely right they are torture.

> When I was between 5 and 7 for two years, three times a week I had to

> electric shock treatment through my legs to try and 'kick start' the

> muscles that weren't working. In many ways that makes NCV/EMG's easy but I

> don't want to repeat them especially when in my case it just appears to

> humour the medics and give them another opportunity to misinterpret them.

> Love

> Sue

>

OMY GOSH! Is this bad medicine or what!!!!!

[Guest guest]

In a message dated 11/19/2001 8:35:47 AM Pacific Standard Time,

sue@... writes:

> - these tests aren't for children in anyway. I first had them done

> when I was 9 and it was criminal.

>

I was 7 then 8 then 18 . I will never do it again! It is Mid Evil.. But that

is just us. Some people even people with CMT is does not bother at all.

Depends on the nerve damage I was told.

[Guest guest]

In a message dated 11/19/2001 8:36:54 AM Pacific Standard Time,

sue@... writes:

> I still know a woman who was a teacher at my school and she told me

> one of the lasting memories she ever has of a child was my dad carrying me

> into school crying after my visits to the hospitals.

Sue makes me sad that our parents were afraid to question the doctors. My

doctor told my Mom to get a second opinion. My Mom sat there saying " OH Know

Your The Doctor " . I was thinking excuse me its my body! She never got a

second opinion before my surgery. Lucky for me the doctor knew a little bit

about CMT. I would have prefered to try Braces before surgery tho.

jenny

[Guest guest]

I'm not sure of the test results. But the doctor's are going to have to prove

to me that it is really medically necessary to repeat the tests for me to have

another one or to put my children through any of them! I told my husband -it

just like a torcher chamber! The one I had about five years ago, the gal

couldn't get any response from the front part of my legs and feet so she kept

cranking up the dial! I would sure question the medical need of another one

especially if the doctor already has a set of the tests.

Good Luck & Happy Thanksgiving to all!

Jane

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

From: Sue Horder-Mason

Sent: Monday, November 19, 2001 10:12 AM

Subject: [] NCV/EMG

Hi

Another question about those blasted NCV/EMG's that were regularly subjected to.

Do the results change after a period of time and do the results vary according

to does them? Or is it a matter of interpretation?

The reason I ask is that I had NCV/EMGs done in Sept 98 and they came back as

normal to mildly reduced (indicative of CMT 2) now another neurologist has

requested another set of tests though he has a copy of the original. He says he

wants them done at his hospital with his people who he trusts.

Now as you can well imagine, I'm not overjoyed about this prospect and was just

wondering if they were necessary.

Thanks for your love, support and wisdom

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

[Guest guest]

Been there heard that. I can't figure out why EMGs are not standardized.

Every MD I have gone to has said the same thing to me. I want my folks to

do the EMG they know how to do it. Well I thought it is done one way.

Funny the results come out the same way.

The only time I got anything different was when my newest neurologist was

testing some of my nerves and found out that I had type 2 also. This was

never found on any of the other EMGs prior to this time. Why, he said that

the other testers did not try this one test. So I guess that was really

important to me.

As for what I would do in your place? I would want to know what having

another test would show? Would it make a difference in my treatment? It

might show that I am getting worse, but is that the only way to know this?

I doubt it. I usually know when I am getting worse. The pain gets worse

and I walk worse, etc...

So do I want to go through the pain of this test... not really unless the

doctor can give me good cause. It just doesn't sound like your doctor has

given you any cause.

Colette

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

From: Sue Horder-Mason [mailto:sue@...]

Sent: Monday, November 19, 2001 10:37 AM

Subject: [] NCV/EMG

Hi

Another question about those blasted NCV/EMG's that were regularly subjected

to.

Do the results change after a period of time and do the results vary

according to does them? Or is it a matter of interpretation?

The reason I ask is that I had NCV/EMGs done in Sept 98 and they came back

as normal to mildly reduced (indicative of CMT 2) now another neurologist

has requested another set of tests though he has a copy of the original. He

says he wants them done at his hospital with his people who he trusts.

Now as you can well imagine, I'm not overjoyed about this prospect and was

just wondering if they were necessary.

Thanks for your love, support and wisdom

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my

work, and my God. " - Helen Keller

[Guest guest]

Jane you're absolutely right they are torture.

When I was between 5 and 7 for two years, three times a week I had to electric

shock treatment through my legs to try and 'kick start' the muscles that weren't

working. In many ways that makes NCV/EMG's easy but I don't want to repeat them

especially when in my case it just appears to humour the medics and give them

another opportunity to misinterpret them.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: Crock

CMT

Sent: Monday, November 19, 2001 4:19 PM

Subject: Re: [] NCV/EMG

I'm not sure of the test results. But the doctor's are going to have to prove

to me that it is really medically necessary to repeat the tests for me to have

another one or to put my children through any of them! I told my husband -it

just like a torcher chamber! The one I had about five years ago, the gal

couldn't get any response from the front part of my legs and feet so she kept

cranking up the dial! I would sure question the medical need of another one

especially if the doctor already has a set of the tests.

Good Luck & Happy Thanksgiving to all!

Jane

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

From: Sue Horder-Mason

Sent: Monday, November 19, 2001 10:12 AM

Subject: [] NCV/EMG

Hi

Another question about those blasted NCV/EMG's that were regularly subjected

to.

Do the results change after a period of time and do the results vary according

to does them? Or is it a matter of interpretation?

The reason I ask is that I had NCV/EMGs done in Sept 98 and they came back as

normal to mildly reduced (indicative of CMT 2) now another neurologist has

requested another set of tests though he has a copy of the original. He says he

wants them done at his hospital with his people who he trusts.

Now as you can well imagine, I'm not overjoyed about this prospect and was

just wondering if they were necessary.

Thanks for your love, support and wisdom

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

[Guest guest]

Oh Colette

What treatment?

I've been chucked out of physio six times and hydro once because they couldn't

do anything. The best I've managed was a pair of crutches and a manual

wheelchair that I can't use unless some is pushing.

I've never had AFO's or anything hence the reason I can't walk now.

But you're right my doctor hasn't given me sufficient reason to repeat the tests

and regarding getting worse - that's obvious I walked with a stick when I had

those tests done in 98.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: Zyrkowski, Colette

' '

Sent: Monday, November 19, 2001 4:19 PM

Subject: RE: [] NCV/EMG

Been there heard that. I can't figure out why EMGs are not standardized.

Every MD I have gone to has said the same thing to me. I want my folks to

do the EMG they know how to do it. Well I thought it is done one way.

Funny the results come out the same way.

The only time I got anything different was when my newest neurologist was

testing some of my nerves and found out that I had type 2 also. This was

never found on any of the other EMGs prior to this time. Why, he said that

the other testers did not try this one test. So I guess that was really

important to me.

As for what I would do in your place? I would want to know what having

another test would show? Would it make a difference in my treatment? It

might show that I am getting worse, but is that the only way to know this?

I doubt it. I usually know when I am getting worse. The pain gets worse

and I walk worse, etc...

So do I want to go through the pain of this test... not really unless the

doctor can give me good cause. It just doesn't sound like your doctor has

given you any cause.

Colette

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

From: Sue Horder-Mason [mailto:sue@...]

Sent: Monday, November 19, 2001 10:37 AM

Subject: [] NCV/EMG

Hi

Another question about those blasted NCV/EMG's that were regularly subjected

to.

Do the results change after a period of time and do the results vary

according to does them? Or is it a matter of interpretation?

The reason I ask is that I had NCV/EMGs done in Sept 98 and they came back

as normal to mildly reduced (indicative of CMT 2) now another neurologist

has requested another set of tests though he has a copy of the original. He

says he wants them done at his hospital with his people who he trusts.

Now as you can well imagine, I'm not overjoyed about this prospect and was

just wondering if they were necessary.

Thanks for your love, support and wisdom

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my

work, and my God. " - Helen Keller

[Guest guest]

- these tests aren't for children in anyway. I first had them done when I

was 9 and it was criminal.

Come to think of it the amount of electricity that's been shoved through me over

the years would light a major city for a week. LOL

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: Mommy2Adam@...

Sent: Monday, November 19, 2001 4:23 PM

Subject: Re: [] NCV/EMG

In a message dated 11/19/2001 8:14:27 AM Pacific Standard Time,

sjcrock@... writes:

> I'm not sure of the test results. But the doctor's are going to have to

> prove to me that it is really medically necessary to repeat the tests for

> me to have another one or to put my children through any of them! I told

> my husband -it just like a torcher chamber! The one I had about five years

> ago, the gal couldn't get any response from the front part of my legs and

> feet so she kept cranking up the dial! I would sure question the medical

> need of another one especially if the doctor already has a set of the

> tests.

My children will not have the EMG.. I have already had the EMGs . The only

reason for my kids to have it is to find out if they have nerve damage. DUH

that's ovbious.

[Guest guest]

I still know a woman who was a teacher at my school and she told me one of

the lasting memories she ever has of a child was my dad carrying me into school

crying after my visits to the hospitals.

Yes, it was bad medicine. Good job I was growing normally or they would have put

me on the rack to stretch me while they were at it.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: Mommy2Adam@...

Sent: Monday, November 19, 2001 4:28 PM

Subject: Re: [] NCV/EMG

In a message dated 11/19/2001 8:25:47 AM Pacific Standard Time,

sue@... writes:

> Jane you're absolutely right they are torture.

> When I was between 5 and 7 for two years, three times a week I had to

> electric shock treatment through my legs to try and 'kick start' the

> muscles that weren't working. In many ways that makes NCV/EMG's easy but I

> don't want to repeat them especially when in my case it just appears to

> humour the medics and give them another opportunity to misinterpret them.

> Love

> Sue

>

OMY GOSH! Is this bad medicine or what!!!!!

[Guest guest]

,

Do you have insurance? Yodon't have to tell me if you think I am too nosey.

But I an always amazed at how much or how little treatment some of the folks

on this list serve are able to get. So I am always wondering is it because

they do not have insurance or because the insurance they have won't cover

what is needed. Those that go to MDA clinics is that a free service and if

it is, is that why there is such a long wait for services.

I guess I am interested in this particular issue because I am looking into a

possible position at the agency where I work with a new program. It is to

provide services and education for those with MD and related nerological

conditions. So the one thing that I always want to understand is why our

health care system can';t seem to get itself together and pay for benefits

for those of us with real problems.

I invite all comments. I don't suspect I can do much at this point, but I

am one person who will pass on the information in many forms as possible

(under assumed names) to get the point across and get changes made...

Colette

[Guest guest]

Colette I live in the UK so I'm covered by the National Health Service. You can

take out private health care insurance in the UK but they won't touch me because

I have a progressive condition.

The only other alternative is to pay and see a doctor privately but that would

be futile seeing as they all work to some degree or another for the NHS.

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: Zyrkowski, Colette

' '

Sent: Monday, November 19, 2001 4:47 PM

Subject: RE: [] NCV/EMG

,

Do you have insurance? Yodon't have to tell me if you think I am too nosey.

But I an always amazed at how much or how little treatment some of the folks

on this list serve are able to get. So I am always wondering is it because

they do not have insurance or because the insurance they have won't cover

what is needed. Those that go to MDA clinics is that a free service and if

it is, is that why there is such a long wait for services.

I guess I am interested in this particular issue because I am looking into a

possible position at the agency where I work with a new program. It is to

provide services and education for those with MD and related nerological

conditions. So the one thing that I always want to understand is why our

health care system can';t seem to get itself together and pay for benefits

for those of us with real problems.

I invite all comments. I don't suspect I can do much at this point, but I

am one person who will pass on the information in many forms as possible

(under assumed names) to get the point across and get changes made...

Colette

[Guest guest]

--- Sue Horder-Mason

<sue@...> wrote:

> Colette I live in the UK so I'm covered by the

> National Health Service. You can take out private

> health care insurance in the UK but they won't touch

> me because I have a progressive condition.

> The only other alternative is to pay and see a

> doctor privately but that would be futile seeing as

> they all work to some degree or another for the NHS.

> Love

> Sue

>

Sue is the other side of the coin, as screwed up as

our system is, (and it's screwed up BIG) I would sure

hate to see a national health system as I understand

Canada and Great Britain's are.

Jim Nash

P.S. I don't have any answers, just a lot of gripes.

The important thing is never to stop questioning.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

> " I Thank God for my handicaps, for through them, I

> have found myself, my work, and my God. " - Helen

> Keller

>

> ----- Original Message -----

> From: Zyrkowski, Colette

> ' '

> Sent: Monday, November 19, 2001 4:47 PM

> Subject: RE: [] NCV/EMG

>

>

> ,

>

> Do you have insurance? Yodon't have to tell me if

> you think I am too nosey.

> But I an always amazed at how much or how little

> treatment some of the folks

> on this list serve are able to get. So I am

> always wondering is it because

> they do not have insurance or because the

> insurance they have won't cover

> what is needed. Those that go to MDA clinics is

> that a free service and if

> it is, is that why there is such a long wait for

> services.

>

> I guess I am interested in this particular issue

> because I am looking into a

> possible position at the agency where I work with

> a new program. It is to

> provide services and education for those with MD

> and related nerological

> conditions. So the one thing that I always want

> to understand is why our

> health care system can';t seem to get itself

> together and pay for benefits

> for those of us with real problems.

>

> I invite all comments. I don't suspect I can do

> much at this point, but I

> am one person who will pass on the information in

> many forms as possible

> (under assumed names) to get the point across and

> get changes made...

>

> Colette

>

[Guest guest]

, I too was directed by my neurologist to have these heinous

tests repeated. I told her that I have done extensive research on

CMT, both on the net and with medical folks I come in contact with

through my work. I asked my neurologist a couple of simple questions.

It is a sure thing I have CMT, right? Answer, YES. There's no cure,

right? Answer, YES. There's no treatment, right? Answer, YES. Then

why would I put myself through that torture again? Answer: Well, we

should understand the progress of your condition.

WHAT???????? No way, Honey!! (female neurologist!) Believe me when

I say I can tell you all about the progress of my condition! I don't

need a bunch of electric shocks to tell me what I can or can't do.

Yep, I use a device to help me do buttons. Yep, I hold onto my wife

when walking is a challenge. Yep, I fall down sometimes when I do

yardwork. Want to know MY diagnosis? SO WHAT! When the time comes, I

will use the dreaded cane to help me with my balance. Big Deal. I use

big fat pens at work, with rubber grips on em to sign my name some

days. Big Deal. It just doesn't matter.

Know what DOES matter? I am blessed with a wife who never refers to

my physical declines. A son (Thanks be to my God) who has just

finished doing the leaves in the yard so I don't have to, and is the

absolute love of my life next to the Mrs, a career beyond my wildest

dreams, and a community that hardly knows I have a physical problem,

or they are just to nice to let me know they know!

Wow, have I rambled! My point is just this........If you have CMT,

accept it. Forget the tests because I don't think they're going to

tell you anything you really need to know. Enjoy life every day up to

your own limits, and give thanks to the MAN for what you have and

what you CAN do! To me, CMT = CAN MANAGE TODAY.

With all respects, BobD

> I'm not sure of the test results. But the doctor's are going to

have to prove to me that it is really medically necessary to repeat

the tests for me to have another one or to put my children through

any of them! I told my husband -it just like a torcher chamber! The

one I had about five years ago, the gal couldn't get any response

from the front part of my legs and feet so she kept cranking up the

dial! I would sure question the medical need of another one

especially if the doctor already has a set of the tests.

>

> Good Luck & Happy Thanksgiving to all!

>

> Jane

>

> ----- Original Message -----

> From: Sue Horder-Mason

> Sent: Monday, November 19, 2001 10:12 AM

> @y...

> Subject: [] NCV/EMG

>

> Hi

> Another question about those blasted NCV/EMG's that were regularly

subjected to.

> Do the results change after a period of time and do the results

vary according to does them? Or is it a matter of interpretation?

> The reason I ask is that I had NCV/EMGs done in Sept 98 and they

came back as normal to mildly reduced (indicative of CMT 2) now

another neurologist has requested another set of tests though he has

a copy of the original. He says he wants them done at his hospital

with his people who he trusts.

> Now as you can well imagine, I'm not overjoyed about this prospect

and was just wondering if they were necessary.

> Thanks for your love, support and wisdom

> Sue

> The important thing is never to stop questioning.

> Website www.horder-mason.freeserve.co.uk

> Freelance Writer and CMTer

>

> " I Thank God for my handicaps, for through them, I have found

myself, my work, and my God. " - Helen Keller

>

>

>

>

[Guest guest]

cdc@... wrote:

>1- I seem to remember reading a study that showed an inordinately high

>% of people who are asymptomatic had readings on either EMG/NCV that

>were indicative of CTS? And these results appparently suggest that too

>many people are being DXed with CTS due to this technology. Does anyone

>remember where that came from? I think I read it a few months ago only.

>

>2- Is the medical standard to perform those tests unilaterally or

>bilaterally. Or is there no standard?

>

>3- Does anyone know which of the tests would be more likely to be

>abnormal in cases were there is:

>a- suspected damage to cervical roots or trunks due to shearing forces

>(like a nerve traction injury)?

>b- suspected damage due to proximate soft tissue injury and subsequent

>long-term inflammation in same area root/trunk region?

>Thaanks.

>

>

>

>

>

Re: 1) In my own case, the neurologist made a point to discuss that NCV

findings when correlated WITH CTS complaints confirmed the Dx. I have

discarded all the various research I had done prior to surgery 8 months

and 24 months ago.

2) Again in only MY case, I was told THIS neurologist USUALLY did

bilateral for comparison and 'better evaluation'... Standard x-rays were

negative.

3) I believe there are many related tests which r/o avulsion root

injury....the SEEMINGLY obvious findings on my 'specific

incidents-->symptoms-->recurring aggravation-->failure of long term

response to conservative methods-->STRONG increase in latency conduction

time-->parallel DDx by DC, DO, MD, all led to my final and reluctant

surgical date. What a fool!! It fixed a pain level 15 (on a 10 scale)

problem virtually instantly, with no recurrence.

I believe recent advances in technological Dx has increased the accurate

DDx of CTS. Had I submitted to surgery 24 months earlier, I would have

avoided all that time of intense misery.

Not that this is a blanket approval of such approaches. It gave me a

chance to observe 'first hand' as a patient what conservative means had

to offer.

Electroaccupuncture actually had me nearly symptom free after 3

months...and at once/month tx I remained pretty much w/o cx....most of

the month. Interuption of that minimal tx schedule for 3 months was

followed by inability to regain that wonderful therapeutic mostly

pain-free plateau....so surgery was indeed the last refuge...and for me

it worked....on both sides....

J. Pedersen DC