Re: For Chris--Muscle Cramps and Spasms

[Guest guest]

Dear

Welcome to this group, a truly caring group of people! By putting our

heads--and hearts--- together, we gain strength and knowledge for this

mito journey.

First, always try to find a doctor willing to listen carefully to you

and to all the distressing symptoms you experience.

One of my major presenting, and current, symptoms is severe muscle

cramping. They will often start in my groin and travel down the entire

leg, rippling the muscles and causing joint contractions. I am unable to

walk, and cry out in pain.(I never murmured a sound when I was in

labor--with very big babies.) If I get a migraine and many hours of

vomiting, I know the cramps will arrive. The COQ10 and Carnitor have

helped.

I could not tolerate the side effects of Neurontin. I take Elavil at

bedtime, and use valium if I have walked alot that day--as I know I wil

be hit with the cramping. My neuro has given me valium (10 mgs) via a

rectal gel, when I am vomiting. (A pharmacist expert at dealing with

ins. companies--he's in NYC--got the ins. to cover this, called Diastat.

It is $100/dose. My neuro had suggested this man, and he is a wonderful

patient advocate. His son is a surgeon, and tells him many health

insurance horror stories.)

The neuro says that valium is the best drug for cramps. (I had tried

quinine in the past, but it did not help.) I also always have with me

Ben-Gay or Tiger Balm, etc., which I rub into the muscles.

I also think that heating pads may help. I am going to get an

electrician to put in another plug that I can easily reach when these

attacks occur. And attacks they are, as you can attest.

(I also have tried flexeril in the past with some success, but I have

never tried it as a preventative, daily regimen.)

Mito takes on a different " face " in each patient; that's one of the

reasons why this group is such a help. We learn of a remedy from someone

else which just may work for another individual.

I wish you all the best.

Sincerely,

from Pennsylvania

USA

[Guest guest]

Hi ,

I agree, Mito takes on a different face for all of us... My doctor is very

hesitant to prescribe valium for the cramps, even though it is helpful... She

says that it is addictive... It's amazing, it doesn't matter the level of your

pain, they are hesitant to go ahead & treat it... Most of the cramps I get are

in my neck/shoulders & arms... I just had botox put into my neck & am hopeful

it will reduce all of those cramps... the cramps generally start in the neck

& then cause the chest/arms to start in... I figured if we could treat the

neck, maybe that would help the rest of it... Right now I'd say it's been

slightly beneficial... it's only been about a week and a half....

Anyways, thanks for the info, I think I will approach the doctor on this one

again...

Chris

In a message dated 4/11/2004 7:58:53 PM Eastern Daylight Time,

writes:

Subject: Re: For Chris--Muscle Cramps and Spasms

Dear

Welcome to this group, a truly caring group of people! By putting our

heads--and hearts--- together, we gain strength and knowledge for this

mito journey.

First, always try to find a doctor willing to listen carefully to you

and to all the distressing symptoms you experience.

One of my major presenting, and current, symptoms is severe muscle

cramping. They will often start in my groin and travel down the entire

leg, rippling the muscles and causing joint contractions. I am unable to

walk, and cry out in pain.(I never murmured a sound when I was in

labor--with very big babies.) If I get a migraine and many hours of

vomiting, I know the cramps will arrive. The COQ10 and Carnitor have

helped.

I could not tolerate the side effects of Neurontin. I take Elavil at

bedtime, and use valium if I have walked alot that day--as I know I wil

be hit with the cramping. My neuro has given me valium (10 mgs) via a

rectal gel, when I am vomiting. (A pharmacist expert at dealing with

ins. companies--he's in NYC--got the ins. to cover this, called Diastat.

It is $100/dose. My neuro had suggested this man, and he is a wonderful

patient advocate. His son is a surgeon, and tells him many health

insurance horror stories.)

The neuro says that valium is the best drug for cramps. (I had tried

quinine in the past, but it did not help.) I also always have with me

Ben-Gay or Tiger Balm, etc., which I rub into the muscles.

I also think that heating pads may help. I am going to get an

electrician to put in another plug that I can easily reach when these

attacks occur. And attacks they are, as you can attest.

(I also have tried flexeril in the past with some success, but I have

never tried it as a preventative, daily regimen.)

Mito takes on a different " face " in each patient; that's one of the

reasons why this group is such a help. We learn of a remedy from someone

else which just may work for another individual.

I wish you all the best.

Sincerely,

from Pennsylvania

USA

[Guest guest]

Dear

Re: Valium. I don't take it every day, only when I know I have taxed my

system by overdoing it or have been vomiting.

Re: Addiction. My neuro would probably say to your doc, " So? " She

believes that pain is vastly undertreated in this couuntry, and that so

many people suffer needlessly. I have been seeing her for almost a year

now, just after a hospital admission for migraine, intractible vomiting,

which then caused tachycardia of 160. Her careful and compassionate care

have kept me out of the ER and the hospital.

She also has sent me to a truly wonderful GI doc for the gastroparesis.

He has done many tests. Among other things, the gp causes malabsorption.

I keep showing low magnesium, so I am now to supplement, which I hope

will help.

I know that it is EXTREMELY difficult to find the right set of docs.

I hope the botox helps; it has a good record for the kind of cramping

you describe.

Good luck!

Sincerely,

[Guest guest]

Chris

I get severe cramps in my neck by just moving to look at something, or reach

for something. I have found that stretching it really helps. It is very

painful, but the sooner I start it, the quicker it goes away.

Good luck with finding some help.

laurie

> From: chris1gill@...

> Reply-To:

> Date: Tue, 13 Apr 2004 07:12:08 EDT

> To:

> Subject: Re: For Chris--Muscle Cramps and Spasms

>

> Hi ,

>

> I agree, Mito takes on a different face for all of us... My doctor is very

> hesitant to prescribe valium for the cramps, even though it is helpful... She

> says that it is addictive... It's amazing, it doesn't matter the level of your

> pain, they are hesitant to go ahead & treat it... Most of the cramps I get are

> in my neck/shoulders & arms... I just had botox put into my neck & am hopeful

> it will reduce all of those cramps... the cramps generally start in the neck

> & then cause the chest/arms to start in... I figured if we could treat the

> neck, maybe that would help the rest of it... Right now I'd say it's been

> slightly beneficial... it's only been about a week and a half....

>

> Anyways, thanks for the info, I think I will approach the doctor on this one

> again...

>

> Chris

>

> In a message dated 4/11/2004 7:58:53 PM Eastern Daylight Time,

> writes:

> Subject: Re: For Chris--Muscle Cramps and Spasms

>

> Dear

> Welcome to this group, a truly caring group of people! By putting our

> heads--and hearts--- together, we gain strength and knowledge for this

> mito journey.

> First, always try to find a doctor willing to listen carefully to you

> and to all the distressing symptoms you experience.

> One of my major presenting, and current, symptoms is severe muscle

> cramping. They will often start in my groin and travel down the entire

> leg, rippling the muscles and causing joint contractions. I am unable to

> walk, and cry out in pain.(I never murmured a sound when I was in

> labor--with very big babies.) If I get a migraine and many hours of

> vomiting, I know the cramps will arrive. The COQ10 and Carnitor have

> helped.

> I could not tolerate the side effects of Neurontin. I take Elavil at

> bedtime, and use valium if I have walked alot that day--as I know I wil

> be hit with the cramping. My neuro has given me valium (10 mgs) via a

> rectal gel, when I am vomiting. (A pharmacist expert at dealing with

> ins. companies--he's in NYC--got the ins. to cover this, called Diastat.

> It is $100/dose. My neuro had suggested this man, and he is a wonderful

> patient advocate. His son is a surgeon, and tells him many health

> insurance horror stories.)

>

> The neuro says that valium is the best drug for cramps. (I had tried

> quinine in the past, but it did not help.) I also always have with me

> Ben-Gay or Tiger Balm, etc., which I rub into the muscles.

> I also think that heating pads may help. I am going to get an

> electrician to put in another plug that I can easily reach when these

> attacks occur. And attacks they are, as you can attest.

> (I also have tried flexeril in the past with some success, but I have

> never tried it as a preventative, daily regimen.)

> Mito takes on a different " face " in each patient; that's one of the

> reasons why this group is such a help. We learn of a remedy from someone

> else which just may work for another individual.

> I wish you all the best.

> Sincerely,

>

> from Pennsylvania

> USA

>

>

>