Re: EMG and NCV diagnostic use

[Guest guest]

I have the 1A and it was bad.

[Guest guest]

Here's my experience... I was diagnosed with CMT when I was 4, but never had

the EMG/NCV tests until a few years ago. In 2006 had problems with my face

feeling like it was ever so slightly numb. My GP sent me to a neurologist in

Hartford. After an MRI, he was stumped as to the face tingling/numbness thing,

but said that it was not due to a tumor or anything. I had told him about the

CMT & how my hands often fell asleep overnight, and he wanted to do the EMG &

NCV. I agreed, thinking that it might give me more info about my CMT.

I would have to say that it was tolerable, but not so much fun. Interestingly,

the one with the needles did not really hurt, as I expected, it was the other

that hurt me. I believe this may be because I am heavy and he had to press so

hard to get to the nerves.

I got the impression that the tests were inconclusive, but he wanted to do

surgery to release the tendon in my right elbow. I wasn't sure that would be a

good thing with CMT, so I told him I wanted to see a neurologist with more CMT

experience. He recommended Dr. Felice, who runs the MDA-related Muscle Disease

Clinic. Dr. Felice did not feel the need to repeat the test, but did have the

blood tests done. Fortunately, the MDA covered what my insurance did not.

Unfortunately, the test did not come back positive for any of the types they can

currently test for. My Dr. is certain that I have Type 1, based on my history &

his examination, and says that we can do more tests as they become available.

In the meantime, I just go on with my life, and hope they come up with a therapy

or cure sometime soon.

[Guest guest]

I know I do not have CMT 1, they believe it is a form of CMT 2 and my first EMG

did not bother me much; the 2nd EMG was horrible and I swore I would not do it

again.

I do agree that it has to do with the nerve damage because my parents said it

did not bother them at all, but my husband who had some nerve damage from fused

discs in his neck said it was horrible for him.

Jackie

[Guest guest]

Oh that's ok........my daughter and G.daughter said never again also.LOL

Geri

LOL sorry Geri,

I should have talked to you about this too. LOL

[Guest guest]

I think it is very interesting how differently we all experience the same thing.

I was trying to explain it to my husband the other day. I have almost no feeling

in my left foot after numerous injuries/surgeries so he asks, if you step on a

tack you don't feel it? and it occurred to me, it's not so much that I don't

feel it, but that it doesn't feel normal. That's not a good explanation either.

I can 'not' notice a tendon sheath begining to shred and keep walking, but on

the otherhand if you ran a feather down the side of my foot I might think you

had run a flame along my foot instead. Feelings are exagerated and changed.

Each NCV felt like someone threw a net that had been boiling in hot oil a second

earlier from the point of shock to the end of the nerve. I could trace for you

every tributary and branch from that point on in a flash. My muscles

involuntarily contracted like a puppet, it was weird. Since the velocity was too

slow, the operator likes to ramp up the signal to see if it will " break out " so

the zaps get more and more intense and the muscle has your leg or arm flopping

all over. Then they always want to move to the other arm or leg for a " control "

and get the same slow response so it makes them want to ramp it up again. It's

not as bad if you have a kind operator who talks you through it. It is cruel if

you have someone who doesn't speak, lays you out on a cold, hard table and never

lets you know what's coming or when. I've experienced both. Well, that's MY

experience with NCV. EMG -- it hurt so bad, I think I've blocked the memory for

the most part. The first time I said, " Why didn't you tell me it would hurt that

bad? " the doc said, " because you wouldn't have let me do it. "

Lori, I'm curious about your face numbness. That has been a big issue for me and

what brought me ultimately to a diagnosis. But we still don't know why my face

gets numb on one side. Did you get any resolution to that?

Holli

>

> Here's my experience... I was diagnosed with CMT when I was 4, but never had

the EMG/NCV tests until a few years ago. In 2006 had problems with my face

feeling like it was ever so slightly numb. My GP sent me to a neurologist in

Hartford. After an MRI, he was stumped as to the face tingling/numbness thing,

but said that it was not due to a tumor or anything. I had told him about the

CMT & how my hands often fell asleep overnight, and he wanted to do the EMG &

NCV. I agreed, thinking that it might give me more info about my CMT.

>

> I would have to say that it was tolerable, but not so much fun.

Interestingly, the one with the needles did not really hurt, as I expected, it

was the other that hurt me. I believe this may be because I am heavy and he had

to press so hard to get to the nerves.

>

> I got the impression that the tests were inconclusive, but he wanted to do

surgery to release the tendon in my right elbow. I wasn't sure that would be a

good thing with CMT, so I told him I wanted to see a neurologist with more CMT

experience. He recommended Dr. Felice, who runs the MDA-related Muscle Disease

Clinic. Dr. Felice did not feel the need to repeat the test, but did have the

blood tests done. Fortunately, the MDA covered what my insurance did not.

>

> Unfortunately, the test did not come back positive for any of the types they

can currently test for. My Dr. is certain that I have Type 1, based on my

history & his examination, and says that we can do more tests as they become

available.

>

> In the meantime, I just go on with my life, and hope they come up with a

therapy or cure sometime soon.

>