(EMG) Nerve testing kids

[Guest guest]

I have CMT 1A and would NEVER ever put my children through an EMG. The test is

mid-evil torture. I have never had any trouble getting medical insurance.

[Guest guest]

I hear ya!!! Had it done when I was 14 and that was bad enough.

[Guest guest]

I recently had an EMG done, and mid procedure, the application froze. The

neurologist said it never used to happen until they went to a Windows app.

So while I've got these painful needles sticking into my muscles, the doctor is

silently muttering " NO, I don't want to send an error report " . Fortunately no

data was lost.

As an aside, a while back someone used a really good phrase to describe the

'buzz' feeling of neuropathic feet. I thought it described the sensation very

well, but cannot remember it. Does anyone out there remember?

Thanks.

O

[Guest guest]

,

I agree with you 100%. When I took Cara in, I told them up front that

we were NOT doing that test on her. Dr. Beson understood completely

and although they haven't officially diagnosed her as having CMT, they

do continue to do follow up visits with her. He was concerned about

future difficulties in obtaining disability and life insurance if she

had that diagnosis. I'd never had any trouble, so didn't think too

much of it. The last open enrollment, I applied for long term

disability and an increase in life insurance and was denied for both.

The reason given was my weight combined with high blood pressure, but

there was a little note that if that was resolved, they would still

have to look at other facters - one of the denial letters mentioned

CMT specifically.

Tonya

[Guest guest]

I kind of disagree with you on the EMG test. I also have CMT 1A, but have no

feeling, so the test didn't hurt whatsoever. Actually, I've had it done twice.

I guess it depends on how bad you have it. If you don't have any feeling in

your legs, how can it hurt? I'm sorry if I'm wrong, I apologize.

in the Keys

[Guest guest]

i just went through 7 months waiting for my appointment to be treated like

cattle being tazered. i'm 26 and it was horrible for e.......i'm a happy

person, but i cried through the whole thing. i also get random electric pains

ALL over my body, and that test made them

MUCH worse in severity and in frequency. i think if they had poked my muscle

from the calf instead of the TOP of my leg, it wouldn't have hurt at all. but it

killed. the shocks became painful and i convulsed between all of them a fair

bit (like when you take a shot of

really foul alcohol) shudder, thats the word. it was all like an alien

abduction scene, and VERY VERY not pleasant. though i would not wish it on a

child, its still a hard decision. i want to say wait until they're old enough to

choose and understand.....but on the other

hand i'd hate to see kids slip through the cracks of healthcare and miss out on

helpful treatment.....tough...

[Guest guest]

Hey ,

I completely agree. When I was 5 I went to the childrens hospital for tests and

the worst of all was the EMG. They told me it felt like sand being poured on

you. I remember kicking and fighting the doctors

and the pain yikes! I will never forget that day and I refuse to have my

daughter tested. If she has it well then it will be evident in time. I had it

again when I was older and it brought back flashbacks. Stay strong.

Andy

[Guest guest]

My sons doctors where able to give him some mild meds for his test.

They pretty much had to as he is Autistic. Maybe you could ask the

doctors about that.

in Missouri - Mom to Jayson 14yrs

[Guest guest]

Andy,

I totally agree. I had that test done the first time when I was 12 years old

(40 now). Then again at 30. But when my daughter was 5 years old the family

doctor we were seeing at that time wanted her to get the EMG test done to

determine if she had CMT.

My husband and I discussed it and I told him that I had that test done when I

was 12 years old and I did not want her to go through that type of test at such

a young age. So we decided to not get

it done.

So when she was about 11, I noticed signs of it and she was

diagnosed with out any type of testing. She is now 15 years old and I feel she

is doing really well with it.

Sue

[Guest guest]

HI in the Keys,

Actually the pain worse with the more involved CMT 1.

[Guest guest]

Not sure what the original comment was because I have been having some computer

issues a losing some emails but. I will never again get an EMG done and I will

never have any of my kids tested. My daughter is 7 and I have about a 99.99

percent idea she has CMT as I can tell by the things she does and the pain she

has. I just got back from my yearly appointment with my specialist and told him

what I suspected. He asked it I wanted to have her tested (DNA test that is), I

declined since I have a good idea already.

My EMG was horrible. Like they are not bad enough to begin with, I sweat very

badly when I get nervous and the sweat was making the testing even worse. I can

say for sure it was about the worst test/procedure that any doctor has ever done

on me.

Matt

[Guest guest]

My son had his nerve tests done in October, he was 13. The doctor left the

decision up to him - if he wanted to have it done. When we went to have it

done, the doctor told him they would stop if it was too painful, they also asked

him many times if he wanted to continue, if he was ok etc.

It was painful and hard to watch but everytime they asked him if they should

stop my son said no. It did make him shudder. They did not have to do the

second part of the test with the needles because they could tell he had type 1

from the conduction portion.

His conduction velocity was 9.9 m/s (on average - everywhere they tested). I

think it is an individual decision and the doctor who preforms the test should

be used to dealing with children.

[Guest guest]

hahahahahahaa!

Ah yes the infamous guinie pig tests. My family was subject to them when I too

was around 5. Here's the scenario (that etched into my brain to this day),

imagine going to University Hospital (in Seattle) with your Mother and siblings.

You literally go to the basement floor where guys in white coats separate you

and take you into a little dimly lit room where they hook you up to a bunch of

wires. Then the man tells you to let him know when you feel anything. then he

begins to turn the volume knob up and down farther and farther until...oop! I

felt somethng. No big deal, let the man know and I'm outta here.

OOOOOOh Noooooo! Not even. " ok Dave, now just a little more. " A little more goes

on until he is litterally shocking me to the point of tears and then a little

more. Friggin Sadists.

When I come out my sister is also in tears and my mother looks at me with a

" sorry, I didn't know' " look.

If you have CMT, you have it. I do not see any reason to be subject to this

treatment. If you have a child and the doctor is wanting to put them through

this, then it's probably for his own sick twisted preversion to find out more

information to put into his personal medical textbook and holds no real

relavence to the torture.

If you do not agree with me, my appologies, I read this and it stirred

something. I was a guinie pig for alot of other tests when I was a kid and it

caused a HUGE aversion to Neuropaths. One which I only now, at 39 am getting

over (if you wanna call seeing one in the last 2 years getting over).

Funny storry about that. I went to see our family Neuropath (Dr. Bird).

My wife decides to go with me for support. On our way I'm joking with her, " Now

watch " , I say, " When we go in here I'm gonna have to be subject to about 2 or 3

medical students poking me and staring with sympetheytic eyes, and the doctor is

going to squeeze me and prod me, and tell me, " yep, you've advanced. " like I

don't already know that. "

She says, " Just don't get upset before you even go in. "

We get there, go in the room, wait, door opens and LO & BEHOLD! 5 medical

sutents all staring at me with sympethetic eyes. My wife begins laughing and

leaves the room ( she came back looking at me with a big shit eating grin).

The doctor proceeds to poke me and prod me, paying more attention to the

students like I'm a lab rat. " See here? " " See here? " " Classic " .

Er, so doc, what's up? " .........

" Oh, you've advanced, see the front nurse and she can get you a note for your

disabled permit. "

Silence on the way home.

[Guest guest]

The first time i had my EMG, the doctor who performed it was so nice and really

engaged me in the procedure by showing me what everything meant and it was not

too dreadful. The 2nd time i had it done, it was horrible. I have a really high

pain threshold and rarely cry during procedures, but i cried through the whole

thing. Was treated like a guinea pig with interns talking around me , although i

understood everything there were saying. When they saw i was crying, they threw

a kleenex on my chest.

My parents had the same test and it was not uncomfortable for them. I think that

when you have a nerve problem, the nerves must be more hypersensitive.

I did tell my doctor afterwards that i will never agree to that test again,

unless i went to a different hospital and had a clinicin who cared about the

person behind the needles!

Jackie

[Guest guest]

Actually we were still in the diagnostic phase when the EMG was

suggested to us & we didn't really know what we were dealing with. When

we showed up for the test the technician said " we're looking for CMT "

and we didn't know what it was.

The actual test was one of my worst days as a parent, as my son

shrieked during the whole test, then the Doctor their tried to recruit

us as patients afterwards! His tests showed nerve speed and response

much slower than normal. We then went to BU Medical Center for the

Blood tests which showed CMT 1A.

I think because the blood testing is so expensive they made us do the

EMG first, but in hindsite I would have gladly paid to skip the EMG.

[Guest guest]

...

We had the the NCV test done when Gavin was 3, neurologist, resident,

medical student and technologist all in the room with us. I will never

forget him crying 'mummy, mummy make them stop', and trying to pull his

sleeves over the electrodes to stop the test. The medical student was

in tears. It seemed like torture..but was definitive, they told right

then what he had and the neurologist said he was thankful that they

didn't need to do the EMG as it was worse. Worse!? I think they do

sedate the child sometimes, but regardless it seems awfull. At least he

was too young to remember it, but I'll never forget. We waited 6 weeks

for the DNA test, perhaps that should be done first, if there are enough

clinical symptoms to suspect CMT, then it makes an EMG moot.

We'll be thinking of you

Take care

Sally