stiff legs

[Guest guest]

In a message dated 5/22/2005 10:49:30 PM Central Daylight Time, b_hammel@... writes:

Can anyone suggest something to help with stiff legs? My daughter has been on 3mg LDN for about a year now and just lately has suffered from very stiff legs - one especially doesn't want to bend at the knee even when she is sitting. This happened when she tried the 4.5mg at the beginning but hasn't since going down to 3mg. She is going to try 1.5mg for awhile but I wondered if anyone has experienced the same thing and found something to help.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I've tried everything! So far nothing seems to help me in that area. Concrete legs. Not fun. I had this symptom before starting LDN. I'm trying Milk Thistle now.

Marcie

[Guest guest]

Have the same: never experienced stiffness before.

Started ldn in august 2004. 1/2 year everything

was wonderfull. Last 4 month I experience for

the first time in my life stiffness.

BUT: stopped smoking in january and got

stiffness about 10 days afterwards. So: maybe

it has to do with that. Dopamine goes down

when you stop smoking; less dopamine can give

stiffness. B6 and magnesium raise dopamine.

I started just today with B6 and magnesium.

When something positive happens I'll mail it

to our great group.

Regards, Simon

>From: marciemjm@...

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: Re: [low dose naltrexone] stiff legs

>Date: Mon, 23 May 2005 09:01:49 EDT

>

>In a message dated 5/22/2005 10:49:30 PM Central Daylight Time,

>b_hammel@... writes:

>

>

> > Can anyone suggest something to help with stiff legs? My daughter has

> > been on 3mg LDN for about a year now and just lately has suffered from

> > very stiff legs - one especially doesn't want to bend at the knee even

> > when she is sitting. This happened when she tried the 4.5mg at the

> > beginning but hasn't since going down to 3mg. She is going to try

> > 1.5mg for awhile but I wondered if anyone has experienced the same

> > thing and found something to help.

> >

>

>+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

>

>I've tried everything! So far nothing seems to help me in that area.

>Concrete legs. Not fun. I had this symptom before starting LDN. I'm

>trying Milk

>Thistle now.

>

>Marcie

_________________________________________________________________

MSN Webmessenger doet het altijd en overal http://webmessenger.msn.com/

[Guest guest]

In a message dated 5/23/2005 3:46:30 PM Central Daylight Time, TwisterAlley2@... writes:

Marcie,

I understand exactly what you are describing. I worked with children who were extremely rigid from diseases like cerebral palsy and other severe spastic diseases. It is a down right shame Medicare will not pay for massage therapy for someone in your condition. Massage therapy and physical therapy combined is exactly what you need. Come to Arkansas and I will work on you myself.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

,

How kind of you! Wish I could! We can put a man on the moon, clone sheep, kittens & possibly humans, and transplant vital organs, but we can't come up with effective treatment for this increible stiffness! Go figure!

Marcie

[Guest guest]

In a message dated 5/23/2005 3:46:30 PM Central Daylight Time, TwisterAlley2@... writes:

Marcie,

I understand exactly what you are describing. I worked with children who were extremely rigid from diseases like cerebral palsy and other severe spastic diseases. It is a down right shame Medicare will not pay for massage therapy for someone in your condition. Massage therapy and physical therapy combined is exactly what you need. Come to Arkansas and I will work on you myself.

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

,

How kind of you! Wish I could! We can put a man on the moon, clone sheep, kittens & possibly humans, and transplant vital organs, but we can't come up with effective treatment for this increible stiffness! Go figure!

Marcie

[Guest guest]

> In a message dated 5/23/2005 10:09:57 AM Central Daylight Time,

> radbower@c... writes:

>

>

> >

> >

> > Is it possible that both of you just need EXERCISE for your legs? If you

> > don't have enough strength to ride a passive exercise bike on your own, I do

> > know of a powered leg exerciser (like the one I use myself, load <A

HREF= " http://www.therapymachine.com/ " >

> > http://www.therapymachine.com</A> and it's the model on the left) that rolls

legs forward and

> > back in a bike-type motion to exercise them. I know it helps to force the

blood

> > to flow throughout my legs because they feel all tingly after I get off it.

> > I stay in it for an hour, each morning and afternoon, and know it helps me.

I

> > paid $2400 for mine new 6 yrs ago, but I know someone (who is selling his

> > wife's gear after she died recently) who is selling hers for $600. Email me

at <A HREF= " mailto:radbower@c... " >

> > radbower@c...</A> if you're interested and I'll hook you up with the

> > seller...

> > Rae

> >

>

> +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

> Rae,

>

> It's a possibility, the stretching thing, but I'm not in a position to spend

> any large amount of money on equipment. The fixed income thing. I'm surely

> not going to buy something without trying it first. Even though the equipment

> turns itself, my legs are so extremely stiff that they may not allow the

> equipment to work. I bought a Craftmatic adjustable bed thinking this would

be

> easier to get on and off. Wrong!!! A lot of money wasted! I know that is

> difficult to understand. One day my legs were sticking straight out. (I was

at

> work.) I had to ask a friend (police officer, 270 pound man) to help bend

them

> to a sitting position. He was so afraid he was hurting me. It wasn't easy

> for him to do. I know how difficult this is to wrap your brain around! I

> couldn't imagine until it happened to me, and I had read about the stiffness.

> Nothing comes close to describing it accurately.

>

> Marcie

=================

Marcie,

I understand exactly what you are describing. I worked with children who were

extremely rigid from diseases like cerebral palsy and other severe spastic

diseases. It is a down right shame Medicare will not pay for massage therapy

for someone in your condition. Massage therapy and physical therapy combined is

exactly what you need. Come to Arkansas and I will work on you myself.

[Guest guest]

Is 1.5 OKmarciemjm@... wrote:

In a message dated 5/22/2005 10:49:30 PM Central Daylight Time, b_hammel@... writes:

Can anyone suggest something to help with stiff legs? My daughter has been on 3mg LDN for about a year now and just lately has suffered from very stiff legs - one especially doesn't want to bend at the knee even when she is sitting. This happened when she tried the 4.5mg at the beginning but hasn't since going down to 3mg. She is going to try 1.5mg for awhile but I wondered if anyone has experienced the same thing and found something to help. +++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++ I've tried everything! So

far nothing seems to help me in that area. Concrete legs. Not fun. I had this symptom before starting LDN. I'm trying Milk Thistle now. Marcie __________________________________________________

[Guest guest]

thank you all for your emails and advice. I have to tell you, tho, my

daughter does physical therapy every day and hamstring exercises

herself as well. No one can understand the type of stiffness unless

experienced yourself or someone you know - I totally understand what

you mean when you say your legs were stiff and like concrete. I

sometimes have to physically force her leg to bend and I worry so much

I might hurt her. she takes B6, can't walk or swim at all, and has

physio every day with no help for the stiffness so I guess we are still

looking for something else. Do those of you who emailed have more since

LDN or less? Her neuro says this is typical of ms and doesn't put it

down to LDN at all. Anyway she is going to try the lower LDN dose and

if it helps we'll let you know!

[Guest guest]

--- In low dose naltrexone , Bobby Arredondo <roundjujitsu@y...>

wrote:

> Is 1.5 OK

>

==============

Any dose under 3.0mg will not halt disease progression.

[Guest guest]

> thank you all for your emails and advice. I have to tell you, tho, my

> daughter does physical therapy every day and hamstring exercises

> herself as well. No one can understand the type of stiffness unless

> experienced yourself or someone you know - I totally understand what

> you mean when you say your legs were stiff and like concrete. I

> sometimes have to physically force her leg to bend and I worry so much

> I might hurt her. she takes B6, can't walk or swim at all, and has

> physio every day with no help for the stiffness so I guess we are still

> looking for something else. Do those of you who emailed have more since

> LDN or less? Her neuro says this is typical of ms and doesn't put it

> down to LDN at all. Anyway she is going to try the lower LDN dose and

> if it helps we'll let you know!

===========

Can you massage her legs daily for her? Have her lay on the bed on her stomach

while you massage the backs of her legs and then turn over on her back while you

massage the fronts of her legs. I was just the opposite, the LDN reduced my

muscle spasms, stiffness & cramping alot. Has she tried taking milk thistle,

one 150mg capsule with her nightly LDN dose and 1 or two capsules the next day?

This might help some. Massage is very important.

[Guest guest]

hi,

have she ever trieid beclofen,tizanidine for her spasticity,beclofen

have good effect in spasticity,

dr.hoori

--- In low dose naltrexone , " paatti1 " <b_hammel@h...>

wrote:

>

> Another try in case someone has a new suggestion. My daughter has

> developed very stiff legs, hard to bend so difficult to sit. She

> started taking Magnesium over a month ago (one suggestion from

someone)

> but so far no change. Also trying Glucosamine recently. The doctor

> has said neither will hurt but held out not much hope for help. Any

> other suggestions anyone?

>

[Guest guest]

Dr. Bihari recommended trying these things BEFORE going for anti-spasticity

drugs. Though they'll reduce the spasticity, they may also render the leg

useless.

[Guest guest]

Don't know if I missed this response but..just in case

My legs were so stiff for the past 2 days I was very nervous until I realized I was taking my old prescription of 6mg LDN. I had to skip last nights dose because my legs were sooooooooo stiff, I could barely move. Maybe the ldn dose should be lowered.

My dose was lowered after 2 1/2 yrs. I don't know if my body adjusted to a more normal balance . All of a sudden the 6mg was too high.

Just a thought, maybe your daughter's dose is too high. Kiki

[Guest guest]

Maybe ibuprofen would help? Like advil.

I hope she feels better soon!

Take Care

:

>

> Another try in case someone has a new suggestion. My daughter has

> developed very stiff legs, hard to bend so difficult to sit. She

> started taking Magnesium over a month ago (one suggestion from

someone)

> but so far no change.

[Guest guest]

Hi Rae, I was looking i into the Baclofen Pump at one time bu I got scared all because I sleep on my back and I didn't know how the pump would affect me if I slept on my back...and I really didn't know if it was going to help me if I got it in...I would like to know how it helped you!! and if you still have it in...at one time I was so stiff that it took me awhile to even get out of bed....seems like the baclofen was making me too relaxed and I couldn't walk well...thanks in advance for your help... RaeAndDoug Bower <radbower@...> wrote: There is another option:

The maximum recommended oral dose of Baclofen is 80mg. I was at this level, taking 4 20mg tablets 4x/day with increasing spasticity, till this last summer, when I had a Baclofen pump surgically implanted to deliver a minute amount of it straight into my spinal column. The routine, 1-night-in-hospital procedure may seem a bit extreme, but if you're at your wits end of dealing with spasticity, I suggest you look into it. It has helped me significantly. Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of bonnie hammelSent: Saturday, December 10, 2005 9:50 AMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: STIFF

LEGS Yes, thank you for your reply. She takes three baclofen a day. She has gone up to four to try it but it made no difference.Bonnie From: "HOORI SHAHWAR" <drhoori@...>Reply-low dose naltrexone To: low dose naltrexone Subject: [low dose naltrexone] Re: STIFF LEGSDate: Sat, 10 Dec 2005 14:25:08 -0000hi,have she ever trieid beclofen,tizanidine for her spasticity,beclofen have good effect in spasticity,dr.hoori>>

Another try in case someone has a new suggestion. My daughter has > developed very stiff legs, hard to bend so difficult to sit. She > started taking Magnesium over a month ago (one suggestion from someone) > but so far no change. Also trying Glucosamine recently. The doctor > has said neither will hurt but held out not much hope for help. Any > other suggestions anyone?>

[Guest guest]

The idea of surgery almost scared me off too. It is a serious way of dealing with the problem; but the surgery was no big thing, just overnight. Sleeping on your back or side doesn't matter -- it won't affect the pump at all. The only times I've felt it is when my therapist gives me crunches, putting pressure down on my knees to my chest when lying on my back. I'm used to it now though and crunches no longer seem to bother it. Do I still have it in? Yes -- it'll stay in there forever, unless I have surgery to remove it. Refilling is no big thing either: they just give it an injection to fill it. With a pump, you just get a tiny bit of Baclofen delivered straight into the spinal column, without all the negatives of oral dosing.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of SimsSent: Saturday, December 10, 2005 9:21 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: STIFF LEGS

Hi Rae,

I was looking i into the Baclofen Pump at one time bu I got scared all because I sleep on my back and I didn't know how the pump would affect me if I slept on my back...and I really didn't know if it was going to help me if I got it in...I would like to know how it helped you!! and if you still have it in...at one time I was so stiff that it took me awhile to even get out of bed....seems like the baclofen was making me too relaxed and I couldn't walk well...thanks in advance for your help...

RaeAndDoug Bower <radbower@...> wrote:

There is another option: The maximum recommended oral dose of Baclofen is 80mg. I was at this level, taking 4 20mg tablets 4x/day with increasing spasticity, till this last summer, when I had a Baclofen pump surgically implanted to deliver a minute amount of it straight into my spinal column. The routine, 1-night-in-hospital procedure may seem a bit extreme, but if you're at your wits end of dealing with spasticity, I suggest you look into it. It has helped me significantly.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of bonnie hammelSent: Saturday, December 10, 2005 9:50 AMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: STIFF LEGS

Yes, thank you for your reply. She takes three baclofen a day. She has gone up to four to try it but it made no difference.Bonnie

From: "HOORI SHAHWAR" <drhoori@...>Reply-low dose naltrexone To: low dose naltrexone Subject: [low dose naltrexone] Re: STIFF LEGSDate: Sat, 10 Dec 2005 14:25:08 -0000hi,have she ever trieid beclofen,tizanidine for her spasticity,beclofen have good effect in spasticity,dr.hoori>> Another try in case someone has a new suggestion. My daughter has > developed very stiff legs, hard to bend so difficult to sit. She > started taking Magnesium over a month ago (one suggestion from someone) > but so far no change. Also trying Glucosamine recently. The doctor > has said neither will hurt but held out not much hope for help. Any > other suggestions anyone?>

[Guest guest]

Thanks Rae for your information...I will take it in consideration...cause it dosen't seem like he baclofen pills working any more..and I an really getting fed up with all this stiffness in my legs problem..... valerieRaeAndDoug Bower <radbower@...> wrote: The idea of surgery almost scared me off too. It is a serious way of dealing with the problem; but the surgery was no big thing, just overnight. Sleeping on your back or side doesn't matter -- it won't affect the pump at all. The only times I've felt it is when my therapist gives me crunches, putting pressure down on my knees to my chest when lying on my back. I'm used to it now though and crunches no

longer seem to bother it. Do I still have it in? Yes -- it'll stay in there forever, unless I have surgery to remove it. Refilling is no big thing either: they just give it an injection to fill it. With a pump, you just get a tiny bit of Baclofen delivered straight into the spinal column, without all the negatives of oral dosing. Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of SimsSent: Saturday, December 10, 2005 9:21 PMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: STIFF LEGS Hi Rae, I was looking i into the Baclofen Pump at one

time bu I got scared all because I sleep on my back and I didn't know how the pump would affect me if I slept on my back...and I really didn't know if it was going to help me if I got it in...I would like to know how it helped you!! and if you still have it in...at one time I was so stiff that it took me awhile to even get out of bed....seems like the baclofen was making me too relaxed and I couldn't walk well...thanks in advance for your help... RaeAndDoug Bower <radbower@...> wrote: There is another option: The maximum recommended oral dose of Baclofen is 80mg. I was at this level, taking 4 20mg

tablets 4x/day with increasing spasticity, till this last summer, when I had a Baclofen pump surgically implanted to deliver a minute amount of it straight into my spinal column. The routine, 1-night-in-hospital procedure may seem a bit extreme, but if you're at your wits end of dealing with spasticity, I suggest you look into it. It has helped me significantly. Rae From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of bonnie hammelSent: Saturday, December 10, 2005 9:50 AMlow dose naltrexone Subject: RE: [low dose naltrexone] Re: STIFF LEGS Yes, thank you for your reply. She takes

three baclofen a day. She has gone up to four to try it but it made no difference.Bonnie From: "HOORI SHAHWAR" <drhoori@...>Reply-low dose naltrexone To: low dose naltrexone Subject: [low dose naltrexone] Re: STIFF LEGSDate: Sat, 10 Dec 2005 14:25:08 -0000hi,have she ever trieid beclofen,tizanidine for her spasticity,beclofen have good effect in spasticity,dr.hoori>> Another try in case someone has a new suggestion. My daughter has > developed very stiff

legs, hard to bend so difficult to sit. She > started taking Magnesium over a month ago (one suggestion from someone) > but so far no change. Also trying Glucosamine recently. The doctor > has said neither will hurt but held out not much hope for help. Any > other suggestions anyone?>

[Guest guest]

Patti,

I had the same thing happening to me for a

while....I found that keeping my legs cool ( to the

touch) help me imensly.....It helped so much that I

threw out my baclofen..... I also keep a cool

washcloth near the bed in case I get spasms in the

night...I just rub my legs down with a cool cloth. It

seems to help me....maybe that could help a little.

--- paatti1 <b_hammel@...> wrote:

> Another try in case someone has a new suggestion.

> My daughter has

> developed very stiff legs, hard to bend so difficult

> to sit. She

> started taking Magnesium over a month ago (one

> suggestion from someone)

> but so far no change. Also trying Glucosamine

> recently. The doctor

> has said neither will hurt but held out not much

> hope for help. Any

> other suggestions anyone?

>

>

>

>

__________________________________________________