Re: something called a Rebuilder

[Guest guest]

,

When Adam was 5 under the direction of Dr. Pape our PT Dilger let is

try TES to see if Adam would have positive results. TES is tiny little machine

with lead wires. The wires attach with a sticky tape to your leg or arms. While

you sleep it gently (very gently) vibrates bringing blood flow to the area. We

did have results with Adam having more feeling where the leads attached. We

gave up TES for a few reasons mostly because the leads would be

kicked off at night.

But during this time I had asked another CMT list (that has since dissolved) if

anyone had any experience with TES. Someone with CMT that worked at Harvard told

me her story. She had tried something similar but the devise she used brought

the muscle to a contraction. I can't remember the doctors name or the name of

the so called therapy. But the person with CMT that tried this went from being

able to jog around the block to being in AFOS and using crutches full time in 3

days. When I mentioned this to our PT she knew exactly

what stimulator I was talking about.

I am trying to say stimulators can do damage over night. Have your brother be

really careful.

[Guest guest]

,

It sounds a bit like a TENS unit but I agree with Gretchen...caution is the

better part of valor!

[Guest guest]

,

It sounds and looks like a TENs unit that a chiropractor uses to relive muscle

spasms, I have a portable TENs unit and my chiro uses one on my back and neck. I

don't think it will do all the things it says it does people will say anything

to sell something I wouldn't pay $300.00 for something that has no scientific

research to back it.

I use my TENs unit and it does nothing for my pain from CMT ask a neurologist

and he'll probably tell you the same thing. So don't wast your money. If it

worked don't you think your doctor would recommend it? Those machines have been

around for years.

Tommy

[Guest guest]

,

I got one a few months ago...I'm willing to try just about anything.

I used it religously for 2 months and saw no improvement in mobility

at all. I can't comment on the easing of pain because I don't have

any pain related to CMT.

The idea of electrical stimulation to help CMT is not new. There is a

holistic medical organization that's based on the research of a guy

named Edgar Cayce who claimed back in the 1920's, I believe, to have

a " cure " for CMT that involves soaking your feet and legs in a

homemade wet cell battery...and also prayer, meditaion, positive

enery and all that sort of stuff...

[Guest guest]

, and all,

Just to share my experience, I also tried this same machine TES (referred to as

the tickle machine). It used low volts of electricity to stimulate the

nerve/muscle and cause it to contract, thus making the muscle stronger.

The problem for me was that due to my CMT I did not experience any muscle

contractions. They set the machine to the highest possible level and I would

experience a burning sensation by no muscle reaction. This was about 10 years

ago and the treatment was offered by a private clinic which meant it was not

covered under our health plan (I am in Canada).

The machine itself cost me $1500 plus consultation fees. The clinic is now

closed and the machine is collecting dust in my closet along with expensive

custom orthotics and assorted AFOs.

What I have found has helped me is daily stretching, gentle pool exercise

program (3 times per week), vitamin C, healthy diet and being grateful for my

many blessings. All these things are basically the advice you will get from our

wonderful group leader Gretchen.

Thanks Gretchen you are an inspiration!

Warm wishes to all,

[Guest guest]

In a message dated 1/18/2006 9:49:41 A.M. Pacific Standard Time,

kotack@... writes:

Just to share my experience, I also tried this same machine TES (referred to

as the tickle machine). It used low volts of electricity to stimulate the

nerve/muscle and cause it to contract, thus making the muscle stronger.

Hi ,

was it a TENS machine or TES machine? I think TES is pretty new

technology. I know TENS has been around a while. TES won't bring the muscle to

a

contraction.