Re: What is an EMG ?

January 31, 2010

Dena,

Yes, the EMG is painfull. Here's all about it.

http://www.webmd.com/brain/electromyogram-emg-and-nerve-conduction-studies

You can also search our archived posts for personal experiences with the EMG.

I've had 3, the first 2 at age 15, absolutely one of my top ten extremely

horrible experiences of life.

Children can be midly sedated, but may freak out with the needles nonetheless.

If you already know your daughter has CMT 1A, then why have this test? It is

only diagnostic tool - not a treatment. So with a CMT 1A diagnosis already, I

would definitely question the doc about this necessity.

Focus on physical therapy (and some kind of exercise), " play therapy " ,

nutrition/vitamins, low stress, rest and sleep.

Gretchen

January 31, 2010

She does recieve PT once a week with early intervention and I am trying get her

into private PT as well. No doctors have suggested it yet. I was unsure if an

EMG can tell you if it is the CMT causing the problems with her feet. The

orthopedic doctor we took her to said it is low tone, the Orthotist tells me we

are way beyond the point of it being low tone.

She has a hard time recovering from any of her specialist appts. So we are

taking a break and like you said contrating soley on all of her therapies that

she recieves (OT, PT, Speech, Special Instruction)

I will not have any tests done on her that will cause her pain or that she needs

to be sedated for until she is old enough to understand what is going on and

able to have her own input in the decison. She was sedated for an MRI when she

was 2 and both my husband and I were a wreck, so far that is the hardest thing

we have ever done. (MRI was normal) The neru-muscular doctor from childrens

hospital of Philadelphia was no help, said she is to young for the CMT 1A to be

affecting her.

Dena

January 31, 2010

Dena,

I am appalled at the docs at children's hospital! CMT can affect infants to

seniors. Physical therapy is crucial intervention for childhood onset of CMT. I

was about 12 when I began it, 3 times a week, privately at home, plus do the

stretches on my own in between. I was also told to swim alot (kicking

strengthens feet) and to walk in the sand (strengthens ankle muscles) And I did

all this. I believe it laid the groundwork for managing my CMT to this day.

Gretchen

January 31, 2010

Dena,

Mind if I ask the name of the doctor? We are planning to see a nero-muscular

doctor there in April.

Lori

<The neru-muscular doctor from childrens hospital of Philadelphia was no help,

said she is to young for the CMT 1A to be affecting her.<

Dena

February 1, 2010

Dena,

I'm with Gretchen on this one. I'm ashamed of the doctor at the childrens'

hospital. I was first diagnosed with CMT when I was 3. My husband and I found

out this past month that it is CMT 1A through a blood test.

The reason I was diagnosed was due to delayed development including walking late

etc.. You need another opinion.

T.

February 1, 2010

Lori,