Re: EMG and NCV diagnostic use

[Guest guest]

Technically, an EMG (electromyography) is a test of the electricity present in

the muscles when at rest and when contracting.

 

The Nerve Conduction Study is the test where the electricity is sent through the

nerves and electrodes are used to detect how well and how fast electricity moves

down the nerves.

 

The two types of tests are typically done together, though not always, and when

combined may be referred to as an EMG study.  These tests can be painful, though

not everyone experiences pain.

 

Here is a YouTube video of a complete EMG study, which includes both parts, the

Nerve Conduction Studies and the Electromyography.

 

The EMG study is a diagnostic tool that when used with other information, such

as clinical evaluation, family history, etc., helps a doctor to make a

diagnosis.  A genetic blood test is more definitive, in that it can confirm that

CMT is the problem and identify the specific type of CMT.  However, genetic

testing hasn't been developed yet for all forms of CMT, so a negative blood test

doesn't mean a person doesn't have CMT. 

 

 

[Guest guest]

i did have one done years ago and it hurt.

[Guest guest]

My mother had one many many years ago,and said it was extremely painful,my

daughter had one done last year,and barely felt a thing.

[Guest guest]

I also had it done..never again!

Geri

[Guest guest]

I have had a few of them. I will never put my children through this test. Umm

well maybe Spencer.

[Guest guest]

Hi all, its been awhile for a post. Summer sure is busy with 3 children.

Anyways my vote for this one is I will never let one of my kids go through EMG.

It was by far the worst test ever preformed on myself. Never ever again. :-)

See ya,

(From Ontario, Canada)

[Guest guest]

I had one also when I was 5 and it was extremely painful so now I'm very

hesitant to let them perform the same tests on my 2 sons. I don't want them

going through all that pain.... & its not like theres anything they can do for

it anyway.

[Guest guest]

Yes, I would not let my son do it. I know he has it, so why go through it?

[Guest guest]

Boy do I wish I had heard this before having my son take the test. The dr wasn't

very clear about what would be done and I didn't know anything about it. We get

to the appt and read the waiver we have to sign and I really had second thoughts

at that point but had to go forward as we were there and waited months for this

appt. I said to myself it would not be too bad, they didn't let me go in with

him but he did take valium to relax.

Well let me tell you if I had known I would NOT have allowed it. He was so upset

and in so much pain they could not complete the test. Now he doesn't even ever

want to get a blood test!! He is 10 and I really regret having it done and am

sorry I didn't go with my instincts while sitting in the waiting room.

Lori

[Guest guest]

The neurologist told me last week that he won't even do the test on kids with

CMT family history. That if CMT has been diagnosed just watch and wait - it's

to painful to put the kid through it.

[Guest guest]

Who benefits from these tests...I dont think it's us.

Geri

[Guest guest]

Lori - I am so sorry your son experienced so much pain with the test. They

should have better prepared you both for what was to come.

My son had it done at about the same age. I really think the level of pain must

have something to do with the type of CMT you have. experienced

discomfort but not excruciating pain. When I had it done years ago (I don't

have CMT) it also caused alot of discomfort but not intolerable pain.

Neither of us will have the test again unless it is absolutely necessary - I

definitely agree with that!

I was allowed to be in the room when my son had his. Why weren't you permitted

to be there I wonder? My warning bells go off when I hear something like that.

Just something to think about....as a parent, I have been present for every

procedure/test has ever had except for those surgical in nature. I have

worn Lead aprons more times than most folks ever have. I've been in the room to

observe CT scans,MRI's, blood draws, EEG's, pulmonary function tests - whatever.

It's my opinion that no medical professional should ever prevent a parent from

being present, unless you will really be in the way - or it is an emergent

situation where life hangs in the balance. Routinely - there shouldn't be a

reason to have you leave. After all, these are our children and you can't be

too careful in today's world.

Now, at 16, still has me be present for most things. He goes in for his

MRI and CT scans without me, but it's at his request, not the techs. They still

ask me if I want to come in. He always wants me in the doc appts. because he

says I ask better questions...which tickles me. He's getting better at

advocating himself though which makes me feel good about his future involvement

in his own medical care.

Sorry this is so long...but you made me start thinking about such topics and

they are super important to parents of younger kids with CMT.

[Guest guest]

The EMG/NCV is used for * diganostic * purposes. So, ultimately, both the

doctor and the patient benefit. It can distinguish between CMT type 1 and type 2

for diagnosis, as I learned from my last one. But like Lori's son the first two

for me as a young person were nightmares. By the 3rd (as an adult) I was

prepared, ate a relaxing lunch before (and included 'positive self-talk') and

took 2 mild muscle relaxants. What a stunner to find out that the same Dr. who

'tried' my very first one, was about to conduct my third!

So I had a nervous monologue to give him, then he calmed me down by explaining

the test has been 'refined' by newer equipment and extra small needles. He and

his staff were very kind to me on this one, keeping me warm with blankets, while

only the limb to be tested uncovered. So, between the muscle relaxants and warm

blankets I felt emotionally better, there was still pain and my nerves/muscles

jumping, but I got through it. And this time I asked for a copy of his written

report to be sent to me so I could have it for my files. The report showed

everything read 'normal' with reinnervation which is indicative of Type 2. So,

the docs and I benefitted from this knowledge.

The first two were completed way before genetic testing or skin biopsies became

available for diagnosis. I only wish genetic testing could be available for all

known types of CMT and that the price would come way down. Then maybe we could

put the EMG/NCV in the grave once and for all.

It wasn't the worst test I've had regarding CMT. The * absolutely worse one *

was a spinal tap, which showed normal results too. But enduring the pain during

and after was excrutiating.

EMG/NCV Info at http://www.mda.org/publications/quest/q75ss.html (mentions CMT)

http://www.ppmrc.com/EMGNCV_c_31.html

http://www.mda.org/publications/quest/q75ss.html

http://www.hmc.psu.edu/healthinfo/e/emg.htm

Lori, and other parents, speaking from my own experience, I got over the initial

pain of it all, emotional and physical pretty quickly, but I still feel it is

barbaric in nature. Looking back on it I guess it seems like some wierd

initiation into life with CMT. Or maybe it's my resilent spirit.

Gretchen

[Guest guest]

I've had an EMG, it didn't hurt because I'm advanced and have significant loss

of feeling. But that nerve biopsy is pretty invasive, I'd never do it to

either an adult or a child.

I had the CMT diagostic test (DNA) done by Athena, VERY expensive but insurance

paid about 90%. But all they did is draw blood, not really painful. The

report was very detailed, and I know exactly what I have. All these years we

thought it was CMT, but it's really HNPP, bsically a missing gene instead of a

defective gene. So if you NEED to know and can afford the copay or the test

outright (around $15K), you'll probably get an exact diagnosis.

But the bottom line is...what difference does it make? HNPP symptons act just

like CMT, there is no medication or cure, knowing really won't change anything.

My life hasn't changed since I took the test, I still need a walker, the braces

were a joke and don't work, my hands are like jelly sometimes...you all know

this because you all deal with it in some degree.

So I feel the best thing is to not concentrate on labeling the disease via

painful tests, but rather find tools to make your life more manageable. Then go

out and enjoy life and make the best of things. I have friends who walk just

fine, but they are battling cancer. So in the scheme of things, having to use a

walker is not such a big deal.

I sell real estate like I have for many years...now I have 2 friends who show

cause I can't do stairs or lots of walking. But I still go and meet with

them to list their house, and so far nobody has seemed to mind the walker or

my associate doing the 2nd floor walk-thru.

People take their cue from you...if you have confidence in your abilities, they

will too.

This type of disease is a royal nuisance, but you can still have a happy and

productive life. Keep hanging onto the 'glass half full' mentality, sometimes a

positive attitude is all we have :-)

Jeanne

[Guest guest]

I have been told by others with CMT type 2 that the EMG was really not

painful.

CMT 1 A EMG hurts like mid-evil torture no matter what degree the disease is at

in my experence. I have had that test twice at 8 and then once at 18. I had a

dead nerve at 18 and still felt horrific pain with the EMG. The doctor did say

the more nerve damage the more pain because the signal doesn't run smoothly. He

actually didn't feel any pain when he tested himself. He said he learned how to

give the test by trying it on himself. LOL

[Guest guest]

Everyone that I talk to with type 2 has said it wasn't that bad. 1A however has

a different story.

[Guest guest]

I did find out years later from my EMG that I have slow to know response

indicating 1 A. I am so grateful for my ped neurologist that spared me all the

other tests. He gave me a few pokes at 8 with the EMG and diagnosed CMT. This

of course was after I had been through an awful EMG at another hospital. I was

so upset the results were inconclusive.

[Guest guest]

Hi ,

I can comment on why medical professionals so often prefer the parent to be out

of the room. You would be surprised how much easier it usually is to deal with a

child on a one-on-one basis. Very often the parent's anxieties get transmitted

to the child making the procedure much more uncomfortable than it would have

otherwise been. Also, it is a common behavior pattern that kids tend to act more

mature when they are without a parent and more childish when the parent is

present.

Of course, as a mother of 5 I see the other side too. And I will admit that I

usually insist on being present. I do feel that in my case I can give them some

stoicism rather than hysteria, but I realize I'm viewing my own actions through

my " mom lenses " . I just wanted to chime in so that people wouldn't assume that

the parent is always being excluded so terrible things can be done with

impunity.

I have had 3 NCVs and a couple EMGs, always different docs who didn't want to go

with what the other guy did, wanted his own results. The last was the worst. I

was a little ticked as I could have told him the results up front, but this guy

had NO bedside manner. He even knew I was a doctor and refused to be pleasant in

any way. He never warned me when he was going to zap me so I was flinching

everytime he measured, thinking I was getting zapped again. When it came to

sticking the electrified needle in my thumb (thenar prominance), I said, is that

really necessary? He looked at me blankly and said it was part of the procedure.

I said I know, I've done this before, but will it give useful information or did

he have enough to go on yet? He just looked blank and repeated himself. I said

I'd rather not if it wouldn't add anything but that I would do it if he thought

there was a good enough reason. Later, I read the report and it said, " study not

complete, patient refused to continue " . At least it was enough to impress my

neurologist and have her order the genetic test.

Holli in Tarzana

[Guest guest]

,

Yes just a reminder to myself and others that go with your gut instinct. If

something doesn't feel right do not do it. That pertains to other things other

than tests also. Needless to say I am going to find us a new neurologist who is

more open and truthful with us in the future.

Lori

[Guest guest]

LOL sorry Geri,

I should have talked to you about this too. LOL

[Guest guest]

And I now feel stronger than ever that knowing has not, at least at this point,

changed anything. We are still on the same track of PT and exercise that we were

doing before 'knowing' . the only difference now is we know it is type 2 vs type

1. Going to bring my son to a physiatrist in a couple weeks and I have the

feeling he will want is to have him take the genetic test. On the fence as I

said earlier 'knowing isn't changing anything'.

Lori

[Guest guest]

Lori,

My parents were in with me and let the test continue and they signed me up for a

second test. You had no idea what the test was about and I am sure the doctor

thought he was doing what he needed to do. I am sure your son knows you are

doing your best.

[Guest guest]

OH yes it is!!!!!!!!!!!

Geri CMT2

I have been told by others with CMT type 2 that the EMG was really not

painful.

CMT 1 A EMG hurts like mid-evil torture no matter what degree the disease is

at in my experence. I have had that test twice at 8 and then once at 18. I had a

dead nerve at 18 and still felt horrific pain with the EMG. The doctor did say

the more nerve damage the more pain because the signal doesn't run smoothly. He

actually didn't feel any pain when he tested himself. He said he learned how to

give the test by trying it on himself. LOL

[Guest guest]

Hi Holli -

I agree with you and see the other side of the issue about kids behaving

differently when their parents are out of the room. I guess it really boils

down to the maturity level of the child and the maturity level of the parent -

no offense to anyone...all I mean is that some folks deal with hearing their

kids in pain or observing the medical stuff better than others. I do really

well with blood and guts stuff and yet my husband passes out at the sight of a

paper cut... has always been really brave about everything which has been

a blessing.

Yet, still, in todays society, you can never be careful enough about leaving

your kids alone - in my opinion. At 15 I still spent the night in the hospital

with him when he had is osteotomies and heel cords surgeries. But that's just

me.

[Guest guest]

Hi Lori!

I tried to send this once...something crashed...so here goes again:

As a parent of a child with a CMT variant I would really opt for knowing what we

are dealing with. If there really is a " cure " coming for CMT1A in the near

future...wouldn't be great to know if you might qualify for research studies and

such? While you still have to deal with the same symptoms regarding of the

" name " I can see great benefit in having it diagnosed with more accuracy.

Again, just my feelings.