Need Some Advice

[Guest guest]

I think people on this group will want to know...

- What dose of LDN are you on? 1.5mg, 3.0mg, 4.5mg ?

- What other suppliments are you currently taking?

- How long have you been in this condition?

- What is your Drs diagnosis? Your personal suspected diagnosis?

- etc.

-

In a message dated 5/5/05 11:04:49 AM Pacific Daylight Time, snoopylover_2000@... writes:

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

Short of a faith healer, and we are in need of a good one,

I hope you are getting some good Calcium Magnesium into your diet.

Reg.

ps

I know you will get a few answers here

-- [low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

In a message dated 5/5/2005 1:05:02 PM Central Daylight Time, snoopylover_2000@... writes:

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

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

Karin,

We sound like identical twins. I have been in my wheelchair for nearly 6 years. Thanks to LDN, I don't have to get up 8 - 10 times a night to use the port-a-pot that sets next to my bed. Making it to the restroom has been out of the question for a long time. I scratch, claw, struggle & fight my way off of the bed. Ain't too pretty & is very dangerous. By that time, it's often too late! I take LDN & Keppra which helps the spasms, so I only have to get up 1 - 2 times per night. The contracting legs are different. I wake up usually 4 - 5 times per night with them. I keep a cane hanging on my headboard so that I can push on my heels to straighten my legs back out. I'm so used to doing this that I go right back to sleep. Baclofen didn't help me either, and I'm not interested in the pump. I am trying the Milk Thistle now, but it's too early to tell. I've tried Valerian & Lobelia with no luck. My pain is 24/7. I've done the chiropractics, accupunture, diets, blah, blah, blah... Nothing touches it. I fight the depression every minute of every day. Of course, my entire family knows what I NEED to do! (It's what THEY want me to do.) I put up a pretty good front & try to not make others around me as miserable as I am. I can't help it. I'm hurting all of the time.

I know what you're dealing with. It's rough, and without being there one can't begin to wrap their brains around what you are describing. You may get suggestions from some, but most here can't imagine what you are describing. I wish I had some tried & true info for you, but I don't.

Hang in there, and fight like hell to beat this thing!

Marcie

[Guest guest]

Karin,

Somehow you must get your legs some movement and exercise. Maybe an electric bike. I have a machine that sits on the floor, you sit in a chair...wheelchair is OK. You put your feet in the pedals and it is electric. It is new and does not work for me because my legs are too heavy. If you like I will send it to you, just send me your address.

I use a Thera-cycle, it is a motorized electric bike and is expensive but very good.

Regards,

Tom

[low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

Karin,

As I read on, I saw the suggestions that I knew would come along. I forgot, I've done so much, about Cal/Mag, bee stings, buffered Vit C, Vit B Complex injections, PT... I've done them all. For me, too much Cal/Mag created a restroom fiasco! Bee stings helped some, until my bee keeper was attacked! Vit C in too large a dose created another bathroom fiasco! Some of the supplements are just so darned expensive & not covered by insurance! I am going to try the Ivory soap thing, I just read about that on Goodshape's board this week. Wouldn't that be great!! So simple! I tried the pool thing, but I'm not comfortable requiring SO much help getting in and out. Some don't understand that we can't even roll onto our sides in bed! Try anything & everything if possible. You may be the one it works for!

Marcie

[Guest guest]

Hi Karin,

My mom has ALS (not MS as I am assuming you have) so I'm not sure

this applies but I thought I'd let you know I just arranged some

physio for her which is currently all range of motion exercises. We

will be adding strength excercises in the near future. We're

starting these excersises once per week but will increase them if

it's not too exhausting for mom.

I have a question....mom has just been prescribed Baclofen and would

like to know why it is " dreaded. " Not sure if this should be off

topic or not....

Good luck Karin,

Marina

--- In low dose naltrexone , KVG <snoopylover_2000@y...>

wrote:

> Hi all,

> I really need some sound advice as I am having an increasingly

painful problem with this.

> I am confined to a wheel chair and my legs are becoming frozen in

the sitting bent position,

> My sleep is very uncomfortable since I am stuck in one position all

night long and unable to move. My legs are contracting all night

long which is extremely painful, last night I got a total of 1 hr of

sleep. I don't know if it's because of lack of sleep, but I'm really

becoming depressed and feeling like I stand no chance of ever getting

out of this damn chair or relieving some of the pain. When I bring

this up to the neuro he wants me to get the Baclofen pump (the pills

aren't working so why would I want to go this route). I have been

taking Valerian, muscle ease, poppy seed with not a whole lot of

help. I am also on the dreaded Baclofen and Zanaflex w/no help.

Does anyone have any ideas? Has anyone heard of anybody in as bad of

condition who has gotten leg movement back and some range of motion?

> Karin

[Guest guest]

Karin,

I am in a wheel chair. I stand but don't walk. I also have the theracycle which is wonderful. I have increasing spaticity in my legs, it is my major symptom. I stretch all I can, somedays are harder than others. I am considering the baclofen pump because it delivers the baclofen straight to the area needed and does not involve your blood stream. I have tried everything else to fight this problem...LDN, acupuncture, herbs, bee stings, diet changes, etc. I am going to talk to a doctor next week about the pump trail. I feel like the LDN will help me recover.

Write me directly if you'd like,

Sue Meier

[low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

In a message dated 5/5/05 3:36:02 PM Pacific Daylight Time, marciemjm@... writes:

I am going to try the Ivory soap thing, I just read about that on Goodshape's board this week.

Marcie

Goodshape's board ??? Could you supply us a link to check them out?

-

[Guest guest]

Hi, I read your message to Karin. My daughter is also in a wheelchair, can stand but not walk. She takes 4 baclofen a day and has little spasticity but a lot of stiffness in her legs (Barbie-doll legs, she calls it). My question is, what is a theracycle? And advice to Karin from me would be to keep exercising. We get to stand as often as we can - at least once an hour when we are home. Just standing and twisting, holding on to me. I think this helps keep the muscles from stiffening too much.Bonnie>From: "Sue Meier" <meiermom@...> >Reply-low dose naltrexone ><low dose naltrexone > >Subject: Re: [low dose naltrexone] Need some advice >Date: Thu, 5 May 2005 14:59:05 -0500 > >Karin, > >I am in a wheel chair. I stand but don't walk. I also have the theracycle which is wonderful. I have increasing spaticity in my legs, it is my major symptom. I stretch all I can, somedays are harder than others. I am considering the baclofen pump because it delivers the baclofen straight to the area needed and does not involve your blood stream. I have tried everything else to fight this problem...LDN, acupuncture, herbs, bee stings, diet changes, etc. I am going to talk to a doctor next week about the pump trail. I feel like the LDN will help me recover. >Write me directly if you'd like, >Sue Meier > [low dose naltrexone] Need some advice > > > Hi all, > I really need some sound advice as I am having an increasingly painful problem with this. > I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position, > My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion? > Karin > > >------------------------------------------------------------------------------ >

[Guest guest]

MARINA, I HAVE HEARD OF PEOPLE GETTING OUT OF WHEELCHAIRS AND PLAYING TENNIS AFTER CALCIUM EAP INJECTIONS AND ALSO GOAT SERUM. I KNOW A MAN WHO WAS IN A WHEELCHAIR FOR 12 YEARS WHO HAS BEEN LEADING A VERY ACTIVE LIFE AFTER CALCIUM EAP. HIS NAME IS DON DOBSON AND HE LIVES IN FT. LAUDERDALE FLORIDA. THE LIBRARY WILL GIVE YOU HIS NUMBER. HE IS WILLING TO TAKE TIME TO TELL OTHERS. KATHY

[low dose naltrexone] Re: Need some advice

Hi Karin,My mom has ALS (not MS as I am assuming you have) so I'm not sure this applies but I thought I'd let you know I just arranged some physio for her which is currently all range of motion exercises. We will be adding strength excercises in the near future. We're starting these excersises once per week but will increase them if it's not too exhausting for mom.I have a question....mom has just been prescribed Baclofen and would like to know why it is "dreaded." Not sure if this should be off topic or not....Good luck Karin,Marina> Hi all,> I really need some sound advice as I am having an increasingly painful problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?> Karin

[Guest guest]

--- In low dose naltrexone , " kathy lintzenich " <mykittypaws@a...>

wrote:

> MARINA, I HAVE HEARD OF PEOPLE GETTING OUT OF WHEELCHAIRS AND PLAYING TENNIS

AFTER CALCIUM EAP INJECTIONS AND ALSO GOAT SERUM. I KNOW A MAN WHO WAS IN A

WHEELCHAIR FOR 12 YEARS WHO HAS BEEN LEADING A VERY ACTIVE LIFE AFTER CALCIUM

EAP. HIS NAME IS DON DOBSON AND HE LIVES IN FT. LAUDERDALE FLORIDA. THE LIBRARY

WILL GIVE YOU HIS NUMBER. HE IS WILLING TO TAKE TIME TO TELL OTHERS. KATHY

========

Karin,

You have got to get some PHYSICAL & MASSAGE therapy to your legs. The Calcium

EAP is a good idea and a combo of these....milk thistle/ acidophilus filler in

your ldn capsules/ malic acid and magnesium/potassium 99mg

/quercetin-sp?/4,000mg to 6,000mg vit C buffered with bioflavonoids/ 8,000mg to

10,000mg daily of good quality MSM(like Bill Rich's brand) start out with

1,000mg and gradually increase as weeks pass, take three weeks to get up to

8,000mg of MSM/calcium 1,500mg-chelated form/Vit B-Complex/vit. D 400IU/ vit. E

start at 400IU and build to 1,000IU/Alfalfa/drink plenty of quality water to

flush out toxins stored in the muscles /Kelp/Valerian root-at bedtime. Also

place a bar of Ivory soap under your bedcovers at night while you sleep. If you

could get lowered into a therapy swimming pool, that would be the best therapy

for your legs.

[Guest guest]

Hi Karin. I too have PPMS and live in a w/chair, stiffening up at night like you. It's imperative that you get your legs MOVING. I've read the advice that you should get an exercise bike, but it sounds to me like you really need a powered exerciser that you strap your legs into, which then rotates them in a bike-type rotation -- forward for half an hour, then backwards for another half an hour -- maybe for a couple of sessions a day, if you have the time. You really need to step up your efforts to get more exercise. I have a friend near Seattle who is selling his wife's gear (including a PDLX leg exerciser for $600 -- sold new at $2,400). If you're interested, email me directly at radbower@....

I too am trying LDN as the last attempt at a peaceful night's sleep before going to a Baclofen pump. LDN 3mg for the first month has helped ease my spasms some, but I'm looking for even more/better results next month when I go up to 4.5mg. What dose are you taking? I'm also taking 80mg of tablet Baclofen daily, 20mg every 6 hrs -- the maximum oral dose recommended -- but other pump users say that only 5mg of Baclofen, fed directly into the spinal fluid, is all it takes to end spasms forever. If a 3 mo trial of LDN 4.5 isn't enough to end night spasms for good in me, I'll then go for the pump.

As for controlling an errant bladder, I LOVE the freedom that I'm experiencing after having a supra pubic catheter installed 18 months ago. Now, I'm in charge of my bladder again -- deciding when I want to go empty my discrete leg storage bag. Now I'm not afraid to go out in public again and participate in long meetings, and I'll be damned if I'm going to let my bladder keep me socially-isolated here at home... which was happening!

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of KVGSent: Thursday, May 05, 2005 1:57 PMlow dose naltrexone ; ms groupSubject: [low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

Hi,

My husband's Dr. is trying him on 15mg of Folirinse (Dr prescribed folic acid) for his restless legs. It seems to be helping. His legs don't sound as bad as yours, so you might ask your Dr. to give you a stronger dose. I really like our Dr. because he always goes for the natural cure first before drugs, although he was quite willing to prescribe LDN too since he had heard so many good things about it. (an unusual Dr.!)

From: KVG

low dose naltrexone ; ms group

Sent: Thursday, May 05, 2005 12:57 PM

Subject: [low dose naltrexone] Need some advice

My legs are contracting all night long which is extremely painful,

[Guest guest]

Rae,

Try the bar of Ivory soap under the bedcovers first before you resort to any

other drastic measures. I'm very interested to know if this works. My

grandmother has leg cramps at night so you who try this remedy let us know what

happens.

[Guest guest]

many times restless legs are from a magnesium deficiency and that is something that men with ms especially need. why? mser's are usually deficient in magnesium and men usually get heart attacks from calcification around the heart. mag pulls cal away from the heart and into the bones where it should be plus cures restless legs in many cases. kathy

[low dose naltrexone] Need some advice

My legs are contracting all night long which is extremely painful,

[Guest guest]

WHAT DOES IVORY SOAP DO? KATHY

Re: [low dose naltrexone] Re: Need some advice

In a message dated 5/5/05 3:36:02 PM Pacific Daylight Time, marciemjm@... writes:

I am going to try the Ivory soap thing, I just read about that on Goodshape's board this week.

Marcie

Goodshape's board ??? Could you supply us a link to check them out?

-

[Guest guest]

Has anyone else read the passage in Tom B.'s book about the woman on CAL-EAP overseas?

It has frightened me away from wanting to try it.

-- Re: [low dose naltrexone] Re: Need some advice

MARINA, I HAVE HEARD OF PEOPLE GETTING OUT OF WHEELCHAIRS AND PLAYING TENNIS AFTER CALCIUM EAP INJECTIONS AND ALSO GOAT SERUM. I KNOW A MAN WHO WAS IN A WHEELCHAIR FOR 12 YEARS WHO HAS BEEN LEADING A VERY ACTIVE LIFE AFTER CALCIUM EAP. HIS NAME IS DON DOBSON AND HE LIVES IN FT. LAUDERDALE FLORIDA. THE LIBRARY WILL GIVE YOU HIS NUMBER. HE IS WILLING TO TAKE TIME TO TELL OTHERS. KATHY

[low dose naltrexone] Re: Need some advice

Hi Karin,My mom has ALS (not MS as I am assuming you have) so I'm not sure this applies but I thought I'd let you know I just arranged some physio for her which is currently all range of motion exercises. We will be adding strength excercises in the near future. We're starting these excersises once per week but will increase them if it's not too exhausting for mom.I have a question....mom has just been prescribed Baclofen and would like to know why it is "dreaded." Not sure if this should be off topic or not....Good luck Karin,Marina> Hi all,> I really need some sound advice as I am having an increasingly painful problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?> Karin

[Guest guest]

--- In low dose naltrexone , " kathy lintzenich " <mykittypaws@a...>

wrote:

> WHAT DOES IVORY SOAP DO? KATHY

>

=========

Some wheelchair bound MS patients say it keeps their legs from cramping and

spasming during sleep.

[Guest guest]

This may sound silly but what do you do with the Ivory Soap?Bonnie>From: "Bren" <TwisterAlley2@...>>Reply-low dose naltrexone >low dose naltrexone >Subject: [low dose naltrexone] Re: Need some advice>Date: Fri, 06 May 2005 03:37:07 -0000>>> > WHAT DOES IVORY SOAP DO? KATHY> >>=========>>Some wheelchair bound MS patients say it keeps their legs from cramping and spasming during sleep.>>>>

[Guest guest]

CINDY, WHAT HAPPENED TO HER? I HAVE NEVER HEARD OF ANYONE HAVING A SIDE EFFECT. I'VE TALKED TO A COUPLE HUNDRED PEOPLE ON THE THERAPY PERSONALLY AND READ DR MORISETTES REPORT WHO WAS A TOTAL SKEPTIC UNTIL HIS WIFE CLAIR WAS HELPED ONLY BY EAP.

[low dose naltrexone] Re: Need some advice

Hi Karin,My mom has ALS (not MS as I am assuming you have) so I'm not sure this applies but I thought I'd let you know I just arranged some physio for her which is currently all range of motion exercises. We will be adding strength excercises in the near future. We're starting these excersises once per week but will increase them if it's not too exhausting for mom.I have a question....mom has just been prescribed Baclofen and would like to know why it is "dreaded." Not sure if this should be off topic or not....Good luck Karin,Marina> Hi all,> I really need some sound advice as I am having an increasingly painful problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?> Karin

[Guest guest]

http://www.goodshape.net/

Re: [low dose naltrexone] Re: Need some advice

In a message dated 5/5/05 3:36:02 PM Pacific Daylight Time, marciemjm@... writes:

I am going to try the Ivory soap thing, I just read about that on Goodshape's board this week.

Marcie

Goodshape's board ??? Could you supply us a link to check them out?

-

[Guest guest]

I haven't read the book, but can you give more specifics about what happened to the gal? I just ordered my first supply, but haven't got it yet...

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of Sent: Thursday, May 05, 2005 9:52 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: Need some advice

Has anyone else read the passage in Tom B.'s book about the woman on CAL-EAP overseas?

It has frightened me away from wanting to try it.

-- Re: [low dose naltrexone] Re: Need some advice

MARINA, I HAVE HEARD OF PEOPLE GETTING OUT OF WHEELCHAIRS AND PLAYING TENNIS AFTER CALCIUM EAP INJECTIONS AND ALSO GOAT SERUM. I KNOW A MAN WHO WAS IN A WHEELCHAIR FOR 12 YEARS WHO HAS BEEN LEADING A VERY ACTIVE LIFE AFTER CALCIUM EAP. HIS NAME IS DON DOBSON AND HE LIVES IN FT. LAUDERDALE FLORIDA. THE LIBRARY WILL GIVE YOU HIS NUMBER. HE IS WILLING TO TAKE TIME TO TELL OTHERS. KATHY

[low dose naltrexone] Re: Need some advice

Hi Karin,My mom has ALS (not MS as I am assuming you have) so I'm not sure this applies but I thought I'd let you know I just arranged some physio for her which is currently all range of motion exercises. We will be adding strength excercises in the near future. We're starting these excersises once per week but will increase them if it's not too exhausting for mom.I have a question....mom has just been prescribed Baclofen and would like to know why it is "dreaded." Not sure if this should be off topic or not....Good luck Karin,Marina> Hi all,> I really need some sound advice as I am having an increasingly painful problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?> Karin

[Guest guest]

Bonnie,

The Theracycle is an electric motorized stationary bike.

Regards,

Tom

[low dose naltrexone] Need some advice > > > Hi all, > I really need some sound advice as I am having an increasingly painful problem with this. > I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position, > My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion? > Karin > > >------------------------------------------------------------------------------ >

[Guest guest]

>

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They're putting the Ivory soap under their bedcovers. I suppose at the foot of

the bed and some are saying it stops their leg cramps and spasms at night.

[Guest guest]

HI KARIN, DURING THE DAY CAN YOU EXERCISE AT ALL? STATIONARY BIKE,YOGA, ETC..THIS MIGHT HELP AT NIGHT KENT

[low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin