Re: is EMG really necessary after all this time?

[Guest guest]

Judith,

I'd say no. I was diagnosed without one about the same length of time

ago as you were. Then in my teens, has 1 and 1/2 EMGs. (the 1/2 was

the first try - it was absolutely a horrible, frightening and painful

experience) and I screamed to get the he** out. I was 15. My parents

sat me down and said they had found another neurologist who could do

it and be nicer and how this *test* would give us light on my CMT. I

bought that, and went through it. The neurologist was nicer, the test

was still horrible and painful. Seeing the blood dripping down my

legs just freaked me out.

Fast forward to 1998 or 1999 - my Internist suggested a *baseline*

EMG. I questioned that. After some discussion and my EMG 'war

stories', I agreed, but I was also told I could take a muscle

relaxant before hand, which, I sure did. It did not affect the

results of the testing at all. The electroneurodiagnostician was

super nice, as was his staff, I was kept comfortable and warm, he did

the tests. Legs, feet, ankles, arms, hands, everything.

And what do you know, his final report said I do not have a

demylenating type of CMT, but *possibly* a neuronal/axonal one. So,

do I really know anymore than I did before the test - NO. I just had

to re-live some of the horror I experienced emotionally at age 15.

Thank God for muscle relaxants!

You have a right to question the need for an EMG, to refuse it, and

to get another doc if you want. On the other hand, the EMG may

possibly reveal the 'status' of your nerves, but sounds to me like

you know this already.

If I EVER am asked to go through another, I'll refuse. Enough is

enough for me.

Have you asked your doc why she feels the need to 're-diagnose' you,

considering your family history speaks of CMT? I'd start asking

questions of her including the question you posted here. Considering

your state of pain, I'd mention that, and ask her for help with pain

control.

~ Gretchen

[Guest guest]

Hi Judith,

I say do an EMG on your doctor and see if that helps her any.

EMGs are midevil!

[Guest guest]

Judith,

Sounds like your better off without their help. " Come here little girl.... I

have a needle and some electricity for you to try. "

[Guest guest]

Judith,

I have to disagree with Gretchen on this one, but only with the

inclusion of Crohns's disease in the mix. In my experience, autoimmune

diseases appear in clusters. My sister has MS, Crohns's, and alopecia.

I have Meniere's (thought by some to be an autoimmune reaction to a

fungus I carry) and CMT. As MS (demyelinating central nerves) is

considered an autoimmune disease, demyelinating CMT could also be

autoimmune in nature.

That being said, and being the victim of multiple EMGs, I think they

are important in obtaining an historical record that, over time, could

point toward some palliative treatment. My last EMG was showed me to

have a demyelinating process, but in conjunction with historical data,

brought up the possibility of CIDP. The probability is not great, but

I am going through testing to see.

Have you connected with your local MDA chapter? They have doctors

whose fields include a lot neuropathy patient. Perhaps a second

consult through the MDA would help.

-- Larry

[Guest guest]

Hi Judith,

I don't post very often but just thought I would add my view on this

topic. I had EMG's done in the spring of 2001 and then again in

January of 2006. My neurologist wanted to see how things had

changed. I don't understand the pain you all talk about. I didn't

feel the test. My tests were totally flat lined in both legs up to

the top of my thighs and my 1 arm was also flat lined. The other

arm barely moved. That was with the elctrodes and the needles. I

didn't even know when he put the needle in my shoulder.

When the doctor had performed the test back in 2001, it was only that way to

just above my knees. He said he has never seen anything like my tests. He

doesn't understand how I walk. My answer was very

carefully.

[Guest guest]

Hi Judith,

I was diagnosed at 15 and will be 40 this year. I have never had an EMG test and

can honestly say I don't ever plan on it. The doctor who diagnosed me tried to

send me when I was 15. My mother asked what the test was and how it would help,

wasn't completely satisfied with the doc's answer and asked a neurologist who

said she didn't suggest it since it had no therapuetic value, wasn't going to

change the diagnosis and wasn't going to change my treatment.

When I first went to the MDA clinic at 26 a doctor there tried to tell me it was

something I needed and tried to strong arm me into it and nearly had his head

from torn from his neck. (I hate having to repeat myself, by the 3rd " no " I was

ready to kill) The first thing the MDA clinic does is an EMG, whether you need

it or not, then they like to test you periodically. They say it is for research,

I say " go zap yourself peeps " .

Hope

[Guest guest]

Hi ,

My test results were just like yours, they could have put supersonic electirc

rods in my legs and I wouldn't have felt it anyway, I think the test is good

because it pinpoints where things are coming from.

I got lucky with a great neurologist who knew what I had by my symptoms and cut

me a break on the price. I had no intentions on going back when I found out it

was going to cost 2500.00, but she was nice enough to know I needed it and it

only cost me 1000.00 and insurance. It was a good feeling just to know what was

wrong with me after dealing with it for years.

Take care,