Re: CMT & EMS-Electric Muscle Stimulation

[Guest guest]

In a message dated 12/9/2001 6:05:17 AM Pacific Standard Time,

k2mar@... writes:

>

> Does any one have any information on EMS and CMT? I have a minor case

> of CMT but my daughter's is more severe. A man in my area with CMT

> showed me an EMS device which was able to contract his calf and other

> muscles. The muscles were tiny but defined. He no longer wears braces.

> Thanks

> JD

I know about EMS DO NOT DO IT... It makes mild CMT cases worse in just days.

on another CMT list experienced this. She went from being able to jogg

and run around the block to needing AFO s in 7 days.

The safe treatment (I have used on my son) it is called TES. It does not

bring the muscle to a contraction it just tickles the skin a tiny bit to

bring blood flow and circulation to certain areas. You can do a search for Dr

Pape to read more about TES.

[Guest guest]

In a message dated 12/10/01 2:48:19 PM, coz1@... writes:

<< But my therapist stll believes in this therapy. >>

Perhaps it's okay for a person with normal nerves, but not for a CMTer.

If I were you I would absolutely refuse to use it ever again.

You proved it isn't for you.

Kat

[Guest guest]

Judy,

According to my physical therapist, is does. I had been doing this in my

therapy for about 8 weeks but stopped about October 28th. I have not

noticest and difference, by the PT says if I keep this up, that I will be

better off and my muscles will be stronger for a longer period of time.

Why ddid I stop? Well the constant muscle contraction really was too much

for my weak muscle and finally my muscle gave away from the bone. So much

for therapy. Now that was something that only caused me more pain. I had

to stop and wait for it to heal. Once that happened, I broke my foot, so I

am still out of PT.... But my therapist stll believes in this therapy.

Colette Zyrkowski, R.D., M.P.H.

Communications Lead

Emergency Operations Center

Centers for Disease Control and Prevention

(404) 639-5012

-----Original Message-----

From: Judy Piersol [mailto:stronggirl2@...]

Sent: Sunday, December 09, 2001 11:34 AM

Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

Hi JD,

I have seen these devices on TV, it's like a GIANT TENZ UNIT, usually

used to relieve pain, but these thing claim to strengthen muscles and

turn fat into muscle.

I've been curious about these things since I saw them, but I thought

these things couldn't possibly work - (a little skepticism is good for

anything sold on late night TV) but has anybody seen these large

electric muscle stimulator that you can wear around your Abs, legs, etc.

They seem to work like a TENZ by zapping a current - when you miss the

spot and your muscles goes zap. zap. zap, but these thing are 'specially

made TO MAKE the muscles contract and release at a rapid pace. They are

being marketed on TV as a 'Weight Loss " and " Muscle Building Unit " I

thought it might be GREAT if they actually worked for those of us in

wheelchairs and others who can't excercise our STOMACHS, BACKS OR OTHER

MUSCLES- Anyone buy one? Do they work? Heck I saw one to exercise your

FACE! I haven't done a 'situp' since I was 5. If these things work,

they could be perfect for non-strenous muscle excercise. This is a GREAT

question JD! I keep seeing these things on late night TV and always

wondered how and if they worked - Can having your muscles electrically

" exercised " really work?

Peace & Love

Judy g.

k2mar wrote:

> Does any one have any information on EMS and CMT? I have a minor case

>

> of CMT but my daughter's is more severe. A man in my area with CMT

> showed me an EMS device which was able to contract his calf and other

> muscles. The muscles were tiny but defined. He no longer wears braces.

>

> Thanks

> JD

>

>

>

>

[Guest guest]

Thanks Colette,

I know I can't stop or improve the areas in which the nerves are

destroyed or have demylenated, which for me, are A LOT. Because whatever

they want to called it now, the doctor who I used to see up until last

year, is at the Mayo clinic and she still calls it Dejerine-Sottas, CMT

type III, Hypertrophic Interstial Neuropathy and/or Onion-Bulb

Neuropathy, me I call it a pain in the butt Sorry, anyway, ever since

I got in my wheelchair, although I don't and have never eat much and

have always been considered, skinny, lanky, etc. I have gained 20lbs ALL

in my belly. I tell people I look like a potato with tooth picks for my

arms and legs and an olive for a head-LOL. It's oh so attractive, to be

a woman who looks like a man with a beer belly! But, it's not really

just the appearance, first of all, the extra weight that has settled in

that one area is giving me more lower back pain. And financially

speaking, 20lbs is a lot of weight in only a few months, and I can't

afford to buy new clothes. I'm 36 and have weighed the same, within a

5lb range since I was 18, but I guess losing the 'exercise' of walking

just really packed the weight on me FAST. Since my abdominal muscles

aren't yet affected, I don't see why it wouldn't help. If I can't

excercise, why not let that gadget do it for me?

Thanks for your help!

Peace & Love

Judy g.

" Zyrkowski, Colette " wrote:

> Judy,

>

> According to my physical therapist, is does. I had been doing this in

> my

> therapy for about 8 weeks but stopped about October 28th. I have not

>

> noticest and difference, by the PT says if I keep this up, that I will

> be

> better off and my muscles will be stronger for a longer period of

> time.

> Why ddid I stop? Well the constant muscle contraction really was too

> much

> for my weak muscle and finally my muscle gave away from the bone. So

> much

> for therapy. Now that was something that only caused me more pain. I

> had

> to stop and wait for it to heal. Once that happened, I broke my foot,

> so I

> am still out of PT.... But my therapist stll believes in this therapy.

>

> Colette Zyrkowski, R.D., M.P.H.

> Communications Lead

> Emergency Operations Center

> Centers for Disease Control and Prevention

> (404) 639-5012

>

>

> -----Original Message-----

> From: Judy Piersol [mailto:stronggirl2@...]

> Sent: Sunday, December 09, 2001 11:34 AM

>

> Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

>

>

> Hi JD,

> I have seen these devices on TV, it's like a GIANT TENZ UNIT, usually

> used to relieve pain, but these thing claim to strengthen muscles and

> turn fat into muscle.

> I've been curious about these things since I saw them, but I thought

> these things couldn't possibly work - (a little skepticism is good for

>

> anything sold on late night TV) but has anybody seen these large

> electric muscle stimulator that you can wear around your Abs, legs,

> etc.

> They seem to work like a TENZ by zapping a current - when you miss the

>

> spot and your muscles goes zap. zap. zap, but these thing are

> 'specially

> made TO MAKE the muscles contract and release at a rapid pace. They

> are

> being marketed on TV as a 'Weight Loss " and " Muscle Building Unit " I

> thought it might be GREAT if they actually worked for those of us in

> wheelchairs and others who can't excercise our STOMACHS, BACKS OR

> OTHER

> MUSCLES- Anyone buy one? Do they work? Heck I saw one to exercise your

>

> FACE! I haven't done a 'situp' since I was 5. If these things work,

> they could be perfect for non-strenous muscle excercise. This is a

> GREAT

> question JD! I keep seeing these things on late night TV and always

> wondered how and if they worked - Can having your muscles electrically

>

> " exercised " really work?

> Peace & Love

> Judy g.

>

> k2mar wrote:

>

> > Does any one have any information on EMS and CMT? I have a minor

> case

> >

> > of CMT but my daughter's is more severe. A man in my area with CMT

> > showed me an EMS device which was able to contract his calf and

> other

> > muscles. The muscles were tiny but defined. He no longer wears

> braces.

> >

> > Thanks

> > JD

> >

> >

> >

> >

[Guest guest]

Physicians with a lot of experience with CMT have advised against any form of

electrical stimulation. It appears to possibly show a short term gain in

muscle size and strength while it actually causes additional damage.

Stimulating our muscles will make them move, BUT our disease is not a disease

of the muscle. Our problem is the nerves. Stimulating the muscle will not

heal our damaged nerves. Our muscles atrophy, not from lack of movement,

but from the nerve damage. You are electrically creating exercise.

The promises of quick " cures, " " losing weight without exerise " and

" miraculous relief' sound wonderful to a person with a chronic illness. Most

of the products advertised in this way whether drugs, dietary supplements or

mechanical devices may not be harmful but worthless and expensive. To avoid

falling into these traps people should discuss with their doctor any other

forms of treatment they are considering.

I can't see how it could help with weight loss, sorry to say. I wish I had a

better answer.

Kat

[Guest guest]

Hi Kat,

I'm trying to figure out if it would help for the abdominal region,

where my nerves have not yet been affected? Do you think it would work

for that?

Peace & Love

Judy g.

KathleenLS@... wrote:

> In a message dated 12/10/01 2:48:19 PM, coz1@... writes:

>

> << But my therapist stll believes in this therapy. >>

>

> Perhaps it's okay for a person with normal nerves, but not for a

> CMTer.

>

> If I were you I would absolutely refuse to use it ever again.

> You proved it isn't for you.

>

> Kat

>

>

[Guest guest]

Thanks Bill for such a well defined and comprehensive answer. It's

strange, when you mentioned you have " rock hard abs under your belly " I

have fairly defined abs- somewhere under there, too. As for diets or

rather eating properly, I do. And my eating habbits, if anything, have

only gotten better. But you are so RIGHT, it's because I can't do

anything to elevate my heart rate. My chair is ELECTRIC and as a

'double-whammy " I broke my neck several years ago and ANY strain, due to

my enlarged nerves (Onion-Bulb neuropathy) causes the nerves to get

severely inflammed at the nerve roots - so it feels like I have a

thousand 'pinched nerves,' which I basically do, until the swelling

subsides, which takes quite a while. - Exercising my upper body has been

a problem ever since the car accident, surgeries in conjunction with my

'lumpy' nerves. It is a bit of a conundrum, I guess. I was just lucky

before I got in the chair - genetically, all of my family, on both

sides, are tall and thin. Well, the good news is that at least it seems

to have 'leveled off' I haven't gained any weight in the past month - it

just stopped at exactly 20lbs. I have an appointment tomorrow and I will

ask for an RX for PT. The folks at UCSF are pretty good or maybe I'll

wait until I go to the MDA clinic on Jan. 17th. Regardless, thanks for

sharing your experiences with me - it has helped quite a bit!

Peace & Love to you & yours

Judy g.

" Bill , Digitec Security " wrote:

> Judy,

> I have some experience with EMS machines, they have been around for a

> long

> time. As a competative weightlifter I have used them in the past. The

> current machines being marketed for abdominal workouts are very

> cheaply made

> units that are nothing but a rip off. Well made machines that will

> last more

> than a month or two can run $500.00 and up.

> Now on to what these abdominal muscle stimulators do. They will

> tighten your

> abs but they will not cause you to lose weight. The only way to do

> that is

> by burning more calories than you consume. These units actually send

> a mild

> electric shock that causes the muscle to contract. You can achieve the

> same

> effect by contracting your abdominal muscles your self. Start off by

> doing 3

> sets of 10 and work your way up to more as you feel comfortable. This

> will

> definately increase muscle tone but it will not burn fat. Trust me, I

> have

> rock hard abdominals under my belly. All of these miracle fitness

> machines

> and products come with a diet plan and they are all essentially the

> same.

> Cut back on fats and oils, eat more vegetables and fruit and stop

> eating 3

> hours before bedtime, there is no mystery to it. But most of us,

> myself

> included do not always stick to a perfect diet. We like food.

> As far as you gaining weight in the mid section after switching over

> to your

> wheel chair, that is a gravitational thing. Is your chair manual or

> motorized? In a manual chair you are still going to burn a fair amount

> of

> calories because you are pushing your body weight around. Stretch as

> much as

> you can. If you have access to a gym see if they have a handbike, this

> is a

> machine that you peddle like a bike with your arms. It was developed

> for

> people who can not use their legs to burn calories and elevate the

> heart

> rate. I hope this helps.

> Regards,

> BC

> ----- Original Message -----

> From: Judy Piersol <stronggirl2@...>

> < >

> Sent: Monday, December 10, 2001 3:53 PM

> Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

>

>

> > Thanks Colette,

> > I know I can't stop or improve the areas in which the nerves are

> > destroyed or have demylenated, which for me, are A LOT. Because

> whatever

> > they want to called it now, the doctor who I used to see up until

> last

> > year, is at the Mayo clinic and she still calls it Dejerine-Sottas,

> CMT

> > type III, Hypertrophic Interstial Neuropathy and/or Onion-Bulb

> > Neuropathy, me I call it a pain in the butt Sorry, anyway, ever

> since

> > I got in my wheelchair, although I don't and have never eat much and

>

> > have always been considered, skinny, lanky, etc. I have gained 20lbs

> ALL

> > in my belly. I tell people I look like a potato with tooth picks for

> my

> > arms and legs and an olive for a head-LOL. It's oh so attractive, to

> be

> > a woman who looks like a man with a beer belly! But, it's not really

>

> > just the appearance, first of all, the extra weight that has settled

> in

> > that one area is giving me more lower back pain. And financially

> > speaking, 20lbs is a lot of weight in only a few months, and I can't

>

> > afford to buy new clothes. I'm 36 and have weighed the same, within

> a

> > 5lb range since I was 18, but I guess losing the 'exercise' of

> walking

> > just really packed the weight on me FAST. Since my abdominal muscles

>

> > aren't yet affected, I don't see why it wouldn't help. If I can't

> > excercise, why not let that gadget do it for me?

> > Thanks for your help!

> > Peace & Love

> > Judy g.

> >

> > " Zyrkowski, Colette " wrote:

> >

> > > Judy,

> > >

> > > According to my physical therapist, is does. I had been doing

> this in

> > > my

> > > therapy for about 8 weeks but stopped about October 28th. I have

> not

> > >

> > > noticest and difference, by the PT says if I keep this up, that I

> will

> > > be

> > > better off and my muscles will be stronger for a longer period of

> > > time.

> > > Why ddid I stop? Well the constant muscle contraction really was

> too

> > > much

> > > for my weak muscle and finally my muscle gave away from the bone.

> So

> > > much

> > > for therapy. Now that was something that only caused me more

> pain. I

> > > had

> > > to stop and wait for it to heal. Once that happened, I broke my

> foot,

> > > so I

> > > am still out of PT.... But my therapist stll believes in this

> therapy.

> > >

> > > Colette Zyrkowski, R.D., M.P.H.

> > > Communications Lead

> > > Emergency Operations Center

> > > Centers for Disease Control and Prevention

> > > (404) 639-5012

> > >

> > >

> > > -----Original Message-----

> > > From: Judy Piersol [mailto:stronggirl2@...]

> > > Sent: Sunday, December 09, 2001 11:34 AM

> > >

> > > Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

> > >

> > >

> > > Hi JD,

> > > I have seen these devices on TV, it's like a GIANT TENZ UNIT,

> usually

> > > used to relieve pain, but these thing claim to strengthen muscles

> and

> > > turn fat into muscle.

> > > I've been curious about these things since I saw them, but I

> thought

> > > these things couldn't possibly work - (a little skepticism is good

> for

> > >

> > > anything sold on late night TV) but has anybody seen these large

> > > electric muscle stimulator that you can wear around your Abs,

> legs,

> > > etc.

> > > They seem to work like a TENZ by zapping a current - when you miss

> the

> > >

> > > spot and your muscles goes zap. zap. zap, but these thing are

> > > 'specially

> > > made TO MAKE the muscles contract and release at a rapid pace.

> They

> > > are

> > > being marketed on TV as a 'Weight Loss " and " Muscle Building Unit "

> I

> > > thought it might be GREAT if they actually worked for those of us

> in

> > > wheelchairs and others who can't excercise our STOMACHS, BACKS OR

> > > OTHER

> > > MUSCLES- Anyone buy one? Do they work? Heck I saw one to exercise

> your

> > >

> > > FACE! I haven't done a 'situp' since I was 5. If these things

> work,

> > > they could be perfect for non-strenous muscle excercise. This is a

>

> > > GREAT

> > > question JD! I keep seeing these things on late night TV and

> always

> > > wondered how and if they worked - Can having your muscles

> electrically

> > >

> > > " exercised " really work?

> > > Peace & Love

> > > Judy g.

> > >

> > > k2mar wrote:

> > >

> > > > Does any one have any information on EMS and CMT? I have a

> minor

> > > case

> > > >

> > > > of CMT but my daughter's is more severe. A man in my area with

> CMT

> > > > showed me an EMS device which was able to contract his calf and

> > > other

> > > > muscles. The muscles were tiny but defined. He no longer wears

> > > braces.

> > > >

> > > > Thanks

> > > > JD

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Judy,

I have some experience with EMS machines, they have been around for a long

time. As a competative weightlifter I have used them in the past. The

current machines being marketed for abdominal workouts are very cheaply made

units that are nothing but a rip off. Well made machines that will last more

than a month or two can run $500.00 and up.

Now on to what these abdominal muscle stimulators do. They will tighten your

abs but they will not cause you to lose weight. The only way to do that is

by burning more calories than you consume. These units actually send a mild

electric shock that causes the muscle to contract. You can achieve the same

effect by contracting your abdominal muscles your self. Start off by doing 3

sets of 10 and work your way up to more as you feel comfortable. This will

definately increase muscle tone but it will not burn fat. Trust me, I have

rock hard abdominals under my belly. All of these miracle fitness machines

and products come with a diet plan and they are all essentially the same.

Cut back on fats and oils, eat more vegetables and fruit and stop eating 3

hours before bedtime, there is no mystery to it. But most of us, myself

included do not always stick to a perfect diet. We like food.

As far as you gaining weight in the mid section after switching over to your

wheel chair, that is a gravitational thing. Is your chair manual or

motorized? In a manual chair you are still going to burn a fair amount of

calories because you are pushing your body weight around. Stretch as much as

you can. If you have access to a gym see if they have a handbike, this is a

machine that you peddle like a bike with your arms. It was developed for

people who can not use their legs to burn calories and elevate the heart

rate. I hope this helps.

Regards,

BC

----- Original Message -----

From: Judy Piersol <stronggirl2@...>

< >

Sent: Monday, December 10, 2001 3:53 PM

Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

> Thanks Colette,

> I know I can't stop or improve the areas in which the nerves are

> destroyed or have demylenated, which for me, are A LOT. Because whatever

> they want to called it now, the doctor who I used to see up until last

> year, is at the Mayo clinic and she still calls it Dejerine-Sottas, CMT

> type III, Hypertrophic Interstial Neuropathy and/or Onion-Bulb

> Neuropathy, me I call it a pain in the butt Sorry, anyway, ever since

> I got in my wheelchair, although I don't and have never eat much and

> have always been considered, skinny, lanky, etc. I have gained 20lbs ALL

> in my belly. I tell people I look like a potato with tooth picks for my

> arms and legs and an olive for a head-LOL. It's oh so attractive, to be

> a woman who looks like a man with a beer belly! But, it's not really

> just the appearance, first of all, the extra weight that has settled in

> that one area is giving me more lower back pain. And financially

> speaking, 20lbs is a lot of weight in only a few months, and I can't

> afford to buy new clothes. I'm 36 and have weighed the same, within a

> 5lb range since I was 18, but I guess losing the 'exercise' of walking

> just really packed the weight on me FAST. Since my abdominal muscles

> aren't yet affected, I don't see why it wouldn't help. If I can't

> excercise, why not let that gadget do it for me?

> Thanks for your help!

> Peace & Love

> Judy g.

>

> " Zyrkowski, Colette " wrote:

>

> > Judy,

> >

> > According to my physical therapist, is does. I had been doing this in

> > my

> > therapy for about 8 weeks but stopped about October 28th. I have not

> >

> > noticest and difference, by the PT says if I keep this up, that I will

> > be

> > better off and my muscles will be stronger for a longer period of

> > time.

> > Why ddid I stop? Well the constant muscle contraction really was too

> > much

> > for my weak muscle and finally my muscle gave away from the bone. So

> > much

> > for therapy. Now that was something that only caused me more pain. I

> > had

> > to stop and wait for it to heal. Once that happened, I broke my foot,

> > so I

> > am still out of PT.... But my therapist stll believes in this therapy.

> >

> > Colette Zyrkowski, R.D., M.P.H.

> > Communications Lead

> > Emergency Operations Center

> > Centers for Disease Control and Prevention

> > (404) 639-5012

> >

> >

> > -----Original Message-----

> > From: Judy Piersol [mailto:stronggirl2@...]

> > Sent: Sunday, December 09, 2001 11:34 AM

> >

> > Subject: Re: [] CMT & EMS-Electric Muscle Stimulation

> >

> >

> > Hi JD,

> > I have seen these devices on TV, it's like a GIANT TENZ UNIT, usually

> > used to relieve pain, but these thing claim to strengthen muscles and

> > turn fat into muscle.

> > I've been curious about these things since I saw them, but I thought

> > these things couldn't possibly work - (a little skepticism is good for

> >

> > anything sold on late night TV) but has anybody seen these large

> > electric muscle stimulator that you can wear around your Abs, legs,

> > etc.

> > They seem to work like a TENZ by zapping a current - when you miss the

> >

> > spot and your muscles goes zap. zap. zap, but these thing are

> > 'specially

> > made TO MAKE the muscles contract and release at a rapid pace. They

> > are

> > being marketed on TV as a 'Weight Loss " and " Muscle Building Unit " I

> > thought it might be GREAT if they actually worked for those of us in

> > wheelchairs and others who can't excercise our STOMACHS, BACKS OR

> > OTHER

> > MUSCLES- Anyone buy one? Do they work? Heck I saw one to exercise your

> >

> > FACE! I haven't done a 'situp' since I was 5. If these things work,

> > they could be perfect for non-strenous muscle excercise. This is a

> > GREAT

> > question JD! I keep seeing these things on late night TV and always

> > wondered how and if they worked - Can having your muscles electrically

> >

> > " exercised " really work?

> > Peace & Love

> > Judy g.

> >

> > k2mar wrote:

> >

> > > Does any one have any information on EMS and CMT? I have a minor

> > case

> > >

> > > of CMT but my daughter's is more severe. A man in my area with CMT

> > > showed me an EMS device which was able to contract his calf and

> > other

> > > muscles. The muscles were tiny but defined. He no longer wears

> > braces.

> > >

> > > Thanks

> > > JD

> > >

> > >

> > >

> > >