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  • 2 years later...

I was having severe pains in my legs before LDN, just little stiff now. Demon MS hasn't sent his witches after me with their broom sticks since LDN started!

B.

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

From: Marie Deady

low dose naltrexone

Sent: Friday, September 05, 2003 8:07 PM

Subject: [low dose naltrexone] spasms

I have been taking tegretol since 1987 for my muscle spasms. I have to take it three times a day. 6am, noon and 6pm. Before the LDN if I forgot to take a pill, my body would do some serious spasms and then I would realize that I had forgotten to take my pill. Sometimes I would only have to be 15 minutes late with the pill.

Now since the LDN (AND THIS BLOWS MY MIND BECAUSE IT IS ANOTHER REMINDER OF HOW MUCH BETTER I AM) I forget to take my tegretol and I don;'t get the spasms. Tonight I realized that I had forgotten to take the 6pm dose, so I went to take it and realized that I also had forgotten to take the noon time dose too. So I haven't had a tegretol since 6am. Isn't that something?

Is anyone else having less spasms?

This makes me soooooooo excited.

Marie

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I have been taking tegretol since 1987 for my muscle spasms. I have to take it three times a day. 6am, noon and 6pm. Before the LDN if I forgot to take a pill, my body would do some serious spasms and then I would realize that I had forgotten to take my pill. Sometimes I would only have to be 15 minutes late with the pill.

Now since the LDN (AND THIS BLOWS MY MIND BECAUSE IT IS ANOTHER REMINDER OF HOW MUCH BETTER I AM) I forget to take my tegretol and I don;'t get the spasms. Tonight I realized that I had forgotten to take the 6pm dose, so I went to take it and realized that I also had forgotten to take the noon time dose too. So I haven't had a tegretol since 6am. Isn't that something?

Is anyone else having less spasms?

This makes me soooooooo excited.

Marie

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Awesome isn't it? I haven't had one single spasm since I started taking ldn. Even the least bit of effort, or walking would cause my legs and/or my back to go into spasms. I do lots of walking around these days.....actually I went for a 2 mile walk the other day, but I have yet to have a spasm.....I love it!!!

Kerry

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

From: Marie Deady

low dose naltrexone

Sent: Friday, September 05, 2003 5:07 PM

Subject: [low dose naltrexone] spasms

I have been taking tegretol since 1987 for my muscle spasms. I have to take it three times a day. 6am, noon and 6pm. Before the LDN if I forgot to take a pill, my body would do some serious spasms and then I would realize that I had forgotten to take my pill. Sometimes I would only have to be 15 minutes late with the pill.

Now since the LDN (AND THIS BLOWS MY MIND BECAUSE IT IS ANOTHER REMINDER OF HOW MUCH BETTER I AM) I forget to take my tegretol and I don;'t get the spasms. Tonight I realized that I had forgotten to take the 6pm dose, so I went to take it and realized that I also had forgotten to take the noon time dose too. So I haven't had a tegretol since 6am. Isn't that something?

Is anyone else having less spasms?

This makes me soooooooo excited.

Marie

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  • 6 months later...
Guest guest

On Sat, 20 Mar 2004 07:31:06 -0800 (PST), you wrote:

>

>Hi all

>

>I think I read a while ago that some people had been advised to take

DL-Phenylalanine to help with spasms and stiffness. I was just wondering how

much this had helped and what dose people were taking.

>

>Take care

>

>Lizzie

>

In my case it did not help at all. Lowering the dose of LDN helped a

bit. Stretching whatever bit is going into spasm is fairly successful

with me but when all else fails a quick puff of Cannabis cures the

spasms instantly.

Steve

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Hi

DL-P helped a little with my stiffness but it wasn't everr very bad. Spasms, I have haad two since I started it but there were also after I started reducing my neurontin. I am 2/3s the dose I was on (I was maxed out on it) and am not sure I will take it down further for a long time if ever.

If you have or have had any trouble with BP you shoould not take this suppliment

I am doing well cuz I have LOW BP and I think it haas raised it some as I dont feel like I am going to faint when I get up quickly anymore.

The main thing it did for me is kinda kick in the LDN,increasing the number of good days in a row

thats my experience with it

ZilNever give up, never surrender

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Your right Zil I just had my BP checked after three days without DL-P and it is getting back to normal but still high. That was all the Dr. could see that was abnormal for me,which was very good. My usual G.P. has been in Australia for the last year "work vacationing" and this is the first time since he came back that he saw me. I needed to get a physical for my drivers license,and a renew on my ldn. prescription. After my checkup I saw what he wrote on the form that MotorVehicles needed and I quote "The patient seems to be stable or slightly improved since the last physical," Now we must remember that I have Chronic progressive and to get that kind of a result after only four months of using a never studied nor double blinded trial, drug, Well what more can I say?

Needless to say I have a new drivers license again and another whole new outlook on life,and a five months prescription for ldn. yes my legs hurt and the DL-P may have been helping but I am now almost fifty and my heart is more important.

Reg.

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

From: low dose naltrexone

Date: 03/22/04 05:30:35

low dose naltrexone

Subject: Re: [low dose naltrexone] Spasms

Hi

DL-P helped a little with my stiffness but it wasn't everr very bad. Spasms, I have haad two since I started it but there were also after I started reducing my neurontin. I am 2/3s the dose I was on (I was maxed out on it) and am not sure I will take it down further for a long time if ever.

If you have or have had any trouble with BP you shoould not take this suppliment

I am doing well cuz I have LOW BP and I think it haas raised it some as I dont feel like I am going to faint when I get up quickly anymore.

The main thing it did for me is kinda kick in the LDN,increasing the number of good days in a row

thats my experience with it

ZilNever give up, never surrender

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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  • 1 year later...

Mine is made by PDLX Tech., which is out of business now. I did have a link for another manufacturer that makes an arm and leg exerciser (which might be my next investment), but I've searched and can't find it. If anyone has one, pls advise.

I did find a place that sells used power wheelchairs though to anyone who needs one: http://www.planetmobility.com/go/usedequip/wheelchairs/power/index.html

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of tbayuk@...Sent: Friday, February 03, 2006 10:23 AMlow dose naltrexone Subject: RE: [low dose naltrexone] spasms

Hi Rae,

I read your very helpful and informatve post.

I am also PPMS and in a power wheelchair. I'm still very active and mobile ( use hand conrols to drive ) , etc. I have been searching for some sort of passive leg exercisor but have only found one "EX N FLEX"....HOWEVER, IT COST $2600.

Do you have any other suggestions?

Regards,

Tom

--Regards, Tom

--------- [low dose naltrexone] spasms > > Well, I am appealing to anyone who might have a suggestion. We have tried > all the suggestions received before (with thanks to you all). My daughter > is secondary progressive - "couch bound". She had a bad exasberation in > September (while on LDN and I'm told this is odd because it was a totally > new problem involving her left leg and side). > Her legs are like concrete most of the time. They spasm as soon as we try to > do anything - exercises in bed, or standing. We do exercises, passive as > well as active, but for some reason she now has a terrible time bending her > knees. I am at my wits end - we have tried heat therapy, glucosamine and > other supplements, but it seems nothing will help. She is on 3 mg LDN, and > has tried different dosages with no change. She takes baclofen and has also > tried different dosages with no obvious change in the spasms. She will see > her doctor in March but I thought I would just ask if anyone has anything > more to offer that we could try before he prescribes some other heavy duty > drug, which we all hate to take but in this case will have no choice. > > > > > > >

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I paid $2400 for mine 7 yrs ago. I use it for at least an hour a day. I've definitely got my money's worth out of the machine.

There is definitely nothing cheap about being disabled. My standing frame cost ~$7K, for example.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of tbayuk@...Sent: Friday, February 03, 2006 10:23 AMlow dose naltrexone Subject: RE: [low dose naltrexone] spasms

Hi Rae,

I read your very helpful and informatve post.

I am also PPMS and in a power wheelchair. I'm still very active and mobile ( use hand conrols to drive ) , etc. I have been searching for some sort of passive leg exercisor but have only found one "EX N FLEX"....HOWEVER, IT COST $2600.

Do you have any other suggestions?

Regards,

Tom

--Regards, Tom

--------- [low dose naltrexone] spasms > > Well, I am appealing to anyone who might have a suggestion. We have tried > all the suggestions received before (with thanks to you all). My daughter > is secondary progressive - "couch bound". She had a bad exasberation in > September (while on LDN and I'm told this is odd because it was a totally > new problem involving her left leg and side). > Her legs are like concrete most of the time. They spasm as soon as we try to > do anything - exercises in bed, or standing. We do exercises, passive as > well as active, but for some reason she now has a terrible time bending her > knees. I am at my wits end - we have tried heat therapy, glucosamine and > other supplements, but it seems nothing will help. She is on 3 mg LDN, and > has tried different dosages with no change. She takes baclofen and has also > tried different dosages with no obvious change in the spasms. She will see > her doctor in March but I thought I would just ask if anyone has anything > more to offer that we could try before he prescribes some other heavy duty > drug, which we all hate to take but in this case will have no choice. > > > > > > >

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