spasms

[Guest guest]

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.

[Guest guest]

I have only been told I probably have MS and my symptoms to me seem like PPMS. I don't have too many problems walking YET so don't know about the exercise machine, but that's so much for the information. Annette

[Guest guest]

Hi Paatti1:

I am primary progressive and have many of the symptoms your daughter seems

to have - sorry to hear it. I have also been taking LDN these last 6 months

(taking as a liquid from dissolving up a 50mg Revia tablet), and although I

don't see any changes in my condition from the drug I continue taking it on

'faith' that it may stop my condition from worsening - which is all I really

hope for. Although there are stories of amazing recovery of motor skills on

LDN, I believe the majority of people on the drug are just like me: hoping

to stabilize and not get worse. I recommend that that should be your

expectation too... which means your daughter's existing capabilities will

likely remain. You therefore need to help her manage her condition as best

she can.

I'm no medic, but to my mind the most important thing she can do is to keep

her legs and body moving. Since I can't walk now and am fulltime in a

wheelchair these last 5 yrs, I'm using a couple of tools that help to keep

me limber that you might be interested in? I have a powered leg exerciser

(since I can't ride or balance on an exercise bike) that rolls my legs

around in a bike-type fashion, which is essential to keep the blood flowing

in my leg arteries to avoid swelling and skin discoloration. I also have a

standing frame from www.altimatetechnology.com (the model 6000 glider, their

top-of-the-line model) which my hubby helps me into every night, that I then

pump myself up into a securely-held standing position, from which I can then

work my arms and legs in a gliding manner. I have finger exercisers,

stretching bands and over-the-door shoulder/arm exercisers too, which all

help to work my extremities, plus I also pay a PT student to come give me a

leg workout every weekday.

So you see, I'm doing a lot to maintain my condition, in the hope that I

don't worsen. I'm not suggesting that you need to do nearly all that I'm

doing, but if your daughter don't put a good exercise regime together, she

may likely slowly stiffen on your couch, eventually becoming bed-ridden long

before her time - which I doubt you want.

I also take Copaxone (been on it for 6 yrs, after going downhill for the 2

prior years on interferon drugs after diagnosis 8 yrs ago), to which I've

had no side-effects at all, apart from minor site reactions for a day -

unlike the interferons, which were much tougher to tolerate.

Last but not least, I suggest you look into power wheelchairs (especially if

she has insurance). If she's having trouble moving, she'll likely not want

to go anywhere - especially if she has bladder trouble too? - which can lead

to social isolation and serious depression. If that's her world, a

wheelchair may do a lot to help her psyche, by getting her out-and-about,

going to the mall or church, volunteering at a local community center or

whatever - participating in society. If she doesn't make an effort to get

out for others, she will likely benefit greatly by doing it for herself. As

for me, I independently ride a wheelchair bus to a nearby disabled service

center where I volunteer my time and am also on the Board. It keeps me busy,

and the socializing with other disabled (not only with those with MS, who

often don't have life near as tough as folks with other disabilities) helps

to keep this illness in perspective.

I'm not trying to show-off by describing all my stuff, but I'm damned

grateful to have the wherewithal to buy the gear I have. But if you can't

afford to buy equipment and have no insurance, you might call your area MS

office to see if they maintain a donation storage locker of used equipment?

My old MS group back in Seattle had a vast collection of gear in 5 storage

garages that they rented or sold cheap to the public.

Lastly, if anyone wants to comment on this to me directly, you can write to

me directly at radbower@....

Good luck, Rae

[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.

[Guest guest]

>

> 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.

>

==========

Your daughter's Lymph glands may be congested like mine are. I am currently

getting Lymphatic Drainage Massage by a trained massage therapist and my

spasticity is very slowly improving. Also get your daughter tested for Lyme via

IgeneX Western Blot(Do a search in your search engine for IgeneX Western Blot).

Do the candida test that I've been posting about for the past few months. If

her lymph glands are hard she needs professional lymph massage. If she has

candida, treat that and don't pass up getting her tested for Lyme via Western

Blot...do not settle for the ELISA lyme test, insist on a Western Blot.

[Guest guest]

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. > > > > > > >

[Guest guest]

Try mixing 50ml of water with 1 50mg tablet. Store in the refrigerator and take 3ml each night (1ml = 1mg).

Vic

[low dose naltrexone] Spasms

Hi,

I was diagnosed with CFIDS in ’92, MS in ’94, Mitral Valve Prolapse in ’95, Multiple Chemical Sensitivity in ’97, advanced-stage breast cancer in ’01, and adult-onset diabetes in ’03. In each case, I have been able to control symptoms and progression through mostly natural means and a holistic approach – very little meds.

I am not yet on LDN, as my physician prescribed 50 mg Naltrexone, not LDN. I have been dividing it into 25 mg and taking it at around 4 pm. I just read, in one of the posts, the method of dissolving the pills and getting a low-dose out of that.

I say all that to introduce myself in general, but I have a specific question. Lately, I have had severe leg, foot, and toe cramps at night, with some physical distortion of the foot and toe. Does anyone know what this might be from?

Thanks,

Annie