Re: EMG Nerve Testing in Adults

[Guest guest]

Hi in the Keys,

Are you certain you have CMT type 1A?

From what I understand Type 2 will not result in a painful EMG.

[Guest guest]

Everyone has different thresholds to pain. It may

have something to do with the severity of the disorder

but I had it at 5 and thats a lot for a kid to go

through. I didn't have a choice to stop and my

parents weren't there during it. It would be one

thing if this magical test would give some hope for

treatment but its just more bad news.

I worked in mental health 9 years and I have heard

some patients say electro convulsive therapy (shock

treatment) didn't hurt but we all know the average

person would certainly feel it. At least that form of

torture can potentially make someone better.

I refuse to have my daughter go through that. Some

things are obvious to the eye. I have it and it is a

high probability she does too. I just hope her

condition is not as severe as mine. She is active and

a happy kid but you can tell something is off. She

walks up the stairs one at a time and holds on to the

railing. Her mother claims it laziness and has seen

her go without the help but she does not agree the

disease exists (denial). She also falls down easily

and runs funny. She can hide it well like I did at

her age but being I have CMT I notice it.

The only thing I am considering is the blood test for

CMT1A which is the one I think I have. Why would I

not know? Years ago doctors pushed for me to get the

blood work done and I paid like $800 out of pocket for

it. Later when I asked to get the results the doctors

refused and said it was for research only. I was

pissed since I paid out of pocket. Be careful about

" professional " CMT doctors because most do not treat

rather they must get some money for making you a

treatment study for students to stare at. I had to go

through that all throughout my childhood. I haven't

been to a doctor about my CMT in 15 years or so and I

made an appt at the same place I went when I was a

child to see if anything has changed since they have

all my records. The first thing I will say is I will

not see anyone but an experienced doctor and they

maybe terribly dissapointed since they used to have

like 10 medical students in the room. By the way this

hospital is recommended in many CMT sites as a good

hospital to go for CMT.

Some people like to patient role and will air their

dirty laundry to anyone but that's not me.

Andy

[Guest guest]

Hi ,

I've had a few EMG's and I don't feel anything when they stick me with the

needles or even when the shock me so your not alone. My new neurologist I go to

see's more people with CMT than my last one so he's helped me alot and the

person who does the NCV (that's only the shock test no needles) keeps asking me

if I feel anything and I feel a little but not enough to bother me.

Tommy

---------------------------------

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in the Answers Food & Drink Q & A.

[Guest guest]

That's what she said, but now that I read all this, I've got an appt. on the

22nd and am going to ask her. Thanks..

[Guest guest]

OK just to add my 5 cents, I've had 3 EMGs with NCV's, starting when

I was a teenager and the most recent in 1999. The first 2 were

horrid, tortuous, etc. I very reluctantly agreed to the one in 1999,

but my Internist " suggested " we get an " adult baseline " one done. OK

to that reasoning, and it was done in a private setting, and I also

took 2 muscle relaxants before. I felt every needle stick and

electric jolt, still horrendous, and fortunately I was kept warm

with heated blankets, and the electro doc was kind. He remembered me

from my UCLA days - small world. So he knew I was nervous about the

da** test to begin with.

The needles used were smaller than 30-40 years ago, but there was

still some blood on my legs and arms. It lasted an hour. I was

cooperative and kept trying to meditate saying the " Serenity Prayer "

over and over.

The test concluded and I asked for a copy of the results to be sent

to me at home. From this testing, I had some revelations. In the

doc's narrative, he had written " results were entirely normal, but

there was some showing indicating reinnervation, thus the patient

does not have a more common form of CMT, but may possibly have a

neuronal (axonal) form such as Type 2.

I feel the test is still a purposeful diagnostic tool, however,

patients (children too) should be allowed to take a mild sedative of

some kind because it is a wicked bad test. I also hope that children

and adults should be allowed their family members in the room during

the test, just for reassurance. My first 2 EMG's I was alone with

the " men in white coats " while I screamed and my mother listened in

the waiting room, but was not allowed in to the test room.

However, the worse diagnostic test I ever had was an old fashioned

Spinal Tap when I was 21. Never, ever again. Worse than wicked bad.

Absolutely sinnister.

I suppose if I had to I could get through another EMG/NCV but am not

making any plans to do so! LOL

~ Gretchen

[Guest guest]

Hi in the Keys,

I had a EMG/NCV test done in 2005 'cuz I wanted to know the type of CMT I have.

My neurologist left the decision totally up to me. Well I did decide to go ahead

& be tested. I was expecting much PAIN. I had one done as a very young teenager

but it was NOT completed 'cuz I was throwing a fit so my mom said enough. This

time it didn't even really bother me. I was allowed to take ibuprofen ahead of

time. Whether that helped or not I don't know. Of course it was uncomfortable

but I just tried to relax & think pleasent thoughts. So I wasn't bothered by

having it at this point in my life. I was 33 (35 now) at the time.

Kerry

[Guest guest]

I am going to a CMT doctor the 21st. 1st CMT doctor in like 15 years so I

anticipate getting the EMG. Maybe the men in the white jackets will give mercy

on me. From what I hear from these posts is those with CMT1A experience more

pain but everyone is different.

I had a spinal tap too but it wasn't that bad but I almost passed out and that

made it so there was movement so I had spinal leakage which caused a spinal

migraine. Picture your worst migraine times 100. I had to get what is commonly

known as a " blood patch " where they take blood out of your arm and inject it

directly into your spine. The pain went away instanly.

If I had to choose between the two I would still choose the spinal tap.

The big difference I think with this topic is adults getting it done compared to

a child. Think of how bad our experiences are and look at how a kid will deal

with it. If its just to see the severity of the disorder why bother it is

evident by physical symptoms. If it was imperative and woould lead to life

altering treatment of course I would have her do it but I would demand she would

be knocked out.

This is a disease that at times is so mental coping more then anything. I feel

in our lifetime there will not be any huge advances.

Andy

[Guest guest]

Consider yourself very lucky. I don't know if that is

good or bad but I am glad some do not have to endure

that pain. I am curious if those who show pain from

getting this procedure done have nerve pain or weird

sensations like I do. Sometimes my body feels like

mild versions of the pins and needles that the EMG

does.

Andy

[Guest guest]

HI in the Keys,

What were your EMG results?

[Guest guest]

Just say NO.

[Guest guest]

I missed the beginning of this discussion, but I think I can add a

little. I had a very painful EMG as a 12 year old, in a concrete room, the

nightmare scene. So two years ago when my neurolist suggested nerve conduction

to look into numbness in my fingers, I was very nervous. This time, though, the

pulses were slightly uncomfortable but not painful. I couldn't believe the

difference.

His little portable machine got the same information on nerve

conductivity that that ancient beast of a machine recorded.

Technology has come a long way. I would still be cautious, ask a lot

of questions, and be a strong advocate for yourself, but medical

technology is changing a lot.

Best of luck,

Lenka

[Guest guest]

I must admit I was on medication when I had them done. The doctor also knew

that. That could have something to do with it, but I don't think to the point

it doesn't bother me. I'm going to look into the possibility it might be type 2.

I take back the fact that it didn't bother me at all, just that it wasn't that

bad. I've also had tattoo's and they didn't bother me. I guess I put myself in

a zone.

[Guest guest]

Gretchen,

I have had the EMG testing done twice. After the last one, about a year and a

half ago, I started on a supplement regimen (which I shared with the group last

September, I think) and have experienced a re-growth of muscle in my calfs and a

whole bunch of other

wonderful things. I am now to the point where I do not notice any problems

associated with CMT other than achy feet every once in a while.

I am really curious to find out if my nerves are also regenerating. I would

like to have the EMG test done again to compare but can't afford to have it

done. Do you know of any CMT research facility that would do this for me?

I had email correspondence with the neurologist over CMT at the University of

Utah MD department. At first she was ecstatic to meet me and find out what I

was doing but when she when I told her that all I was doing was taking

supplements she ceased contact with

me. I am hoping this isn't a case of the " If we can't patent it then we don't

want it " disease but it sure seems that way. What is really ironic, however,

is that a huge part of the science behind the supplements I am taking came from

the University of Utah.

Also, it is important to know that I had DNA testing done which confirmed CMT

type 1A.

Thank you for all you do,

Matt Shepard in S.L.C.

[Guest guest]

Hi Matt,

My first suggestion was going to be to go to the Neuro at U of Utah,

so much for that one, lol. It really annoys me to hear your doc

refused you because of the supplements. Is there any chance you can

go to another doc at the U of U Neurology Dept?

Since you are " out West here " - I am thinking out loud - maybe

contact University of California at - that could be a wild

card, but that's all I can think of, OR what about going to an MDA

clinic, see a new doc, and suggest you are re-evaluated? Or talk a

private practice doc into doing the test and make an arrangement to

pay $20 a month until it's paid off.

In Paolo Vinci's book he has a section on reinnervation and

collateral that was especially helpful for me to read. I still

believe in the impact my long time use of Vitamin E too.

Sorry I am not of more help.

~ Gretchen

[Guest guest]

Gretchen,

I had California and Oregon in the back of my mind already since I

have family in Oregon and I go to California on business every once

in a while. However, I had not thought of the idea of a private

practice doc and doing a payment plan. That is a good idea.

Matt

[Guest guest]

Hi Matt,

I use my private insurance for my EMG's and I had 3 in the past 3 years my

insurance company pays for them and it doesn't cost me anything but my co-pay

that my insurance company charges and I'm on SSDI.

Tommy

[Guest guest]

This is going to sound ignorant, but I don't know. Where do I look for my EMG

results? I'm not the most organized person in the world but I'm going to ask

the doctor on the 22nd or look for my papers and let you know.

[Guest guest]

Hi in the Keys,

Not ignorant at all. I had to ask my doctor for a copy of the test. Then I

didn't understand them so I faxed them over to a nurse that also had CMT. She

explained them to me in detail.

[Guest guest]

Hi ,

Call up the doc who performed your EMG. Ask for a copy to be sent to

you. You may have to send a formal written request, but that's easy.

Besides the numerical readings on mine, the testing doc wrote a

narrative summary (in English) that explained everything he found and

offered his opinion. It was my Internist who ordered the EMG/NCV, so

in fact I got the same copy that my Internist got. The written summary

was very easy to understand too.

~ Gretchen

[Guest guest]

I haven't been on this site for awhile, but couldn't help responding to all this

talk about the EMG's. I had one when I was in my 20's, and was shaking for an

hour afterwards. Now I am in my 40's, and I went to the Wayne State University

clinic last year to be evaluated with my 2

children that have it.

I thought we'd be part of their study. But, now I'm not so sure. At least, not

the EMG part of it. I could only handle part of the test, and had them stop

because it was so bad. My 9 year old daughter was also getting tested in the

other room. She tried to be brave, but came out in tears. I'll never put her or

myself through that again. I don't think it's worth it.

In fact, I don't know if anyone has mentioned this, but couldn't it make your

CMT progress faster? Stress makes it worse, and that is DEFINITELY stress!

My finger (where the needle was) lost feeling in the tip of it for about 8

months!!! We had the blood test done, so we already know the 3 of us have CMT

1A, I'm not going to do anything to make it worse!

Lori

[Guest guest]

That is so odd. My EMGs have never been as bad as you describe. Could

you have your doc prescribe a Xanax before you go to help you endure

the procedure? My neurologist has his students practice performing

EMGs on him all the time. My neurologist and I both agree that the

procedure is annoying but not unbearable. Could you try getting the

EMG done in a different place next time?

I hear that some people administer the tests much more gently than others. I am

going for one on Tuesday and I am actually looking forward to it. I want to

know exactly what the state of my right arm/hand is. I think these awful stories

tend to scare people.

I remember all of the bad things I heard about getting wisdom teeth removed. I

was so scared! But I had an unbelievably wonderful wisdom teeth removal

experience. I got to lay around in bed for two days with my family waiting on

me. Glorious! And no pain due to the help of some painkillers!

P

[Guest guest]

When I was getting tested, I remember the technician saying that the

test didn't really bother her. I mentioned to her that maybe it could

be that since she didn't have CMT, her nerves responded at a lower

level. I think that with CMT, our nerves are thicker, therefore, the

shock is turned up to a higher level to get response, yet we still feel

the full impact of the pain. That's my theory anyway, it sounds like

some people don't feel much pain at all, I guess we're all different.

Lori