This Is MS Multiple Sclerosis Knowledge & Support Community

The only thing that seems to help is drinking
and my neuro is b*tchy about me drinking and
having valium (not like I swig rum and chase it w/handfuls
of valium, frankly its insulting)
Nothing but rum (cheap vodka is nasty but
cheap rum works) helps my leg pain
My legs are super stiff, trying to do leg lifts doesn't work well as they're hard to lift
I trip on the stairs, I trip on flat surfaces, my knees/muscles around them
clench up as I walk (I call it my football injury jokingly - though I've never played it, but I digress)
they clench up as I walk and I literally can't move for a few mins
I don't know what to do
I feel like my neuro thinks I am a druggie/drunk
because I asked him for codeine, I can't tolerate most pain pills (demerol, oxycontin, vicadin, etc - severely adverse affects)
Wth am I supposed to do? Aspirin isn't strong enough
I ran out of my aspirin/codiene (I got from Canada before the homeland security bs and I have no passport
and limitec transportation)
So what do I do?
Leg exercises don't work well due to not moving them well
I'm.so tired of tripping and this stiffness HURTS

get a new neuro and read this http://www.thisisms.com/forum/general-d ... 18887.html

beyond that do what feels best for YOU!

Hi Maledicte,
Are you taking any magnesium in your supplement regimen? There have been several discussions on the forum of it helping with muscle spasticity.


NHE

I take cal/mag, but lately been forgetting (another fun MS prb, horrible memory)
Sometimes I'm so fed up I feel like ending it

I take 1000 mg calcium and 600 mg magnesium. helps for the spasms but not the stiffness. Red wine ( I have a glass or two a day) and sleeping with the bed frame raised at the head by at least 4 " helps a bit. I take baclofen but it doesn't do anything for the stiffness. I have heard that savitex really helps with stiffness, trying to get a prescription for the spray to see if it helps. My left leg is similar in that I often can't bend the knee and then I trip and so on.

Have you told your neuro (think about getting a new one as previously suggested) specifically about the stiffness in your leg. There are a few drugs outthere that the neuro's seem to be willing to try.

I take magnesium 1200mg, 1500mg calcium which has helped with spasms.
Wine is wonderful to relax helps with all manner of problems - a glass or two in the evening is great. White or red does it for me as long as it's not sweet.
I'm in Canada so medical marijuana is an option and the stuff does help with spasticity.
I don't even have a neuro so at least I don't have to listen to any disapproval of what I do - in fact I don't even have a GP as they are almost impossible to find here on Canada.
I've heard good things about sativex and am going to go to a walk in clinic to get a prescription.

I left a msg for my neuro
I've tried marijuana - did nothing for pain, just made me walk really off balance
this state is so anti valium, anti codiene (but they hand out oxycontin like its candy)
It's like if it helps you, they are against it
Its like do your job!! Am I trying to get valium refilled every 2 weeks?
No, in fact I get it refilled about 2 weeks after its due to be filled, obv I don't have an addiction prb
They sterotype everyone here
Everyone is a drunk pain med junkie (yet so easy to get offered pain meds I can't even take!)
I'm frustrated
I'm fed up
I HATE MS!!!!
I miss my walks around my neighborhood
I miss hot baths
I miss seeing well, esp at night
I have awful fatigue
I fall asleep 5-6pm (get up about 20 times to urinate)
I wake up 4-5 am
And I don't feel rested
I drink coffee to wake up fron feeling groggy
I know I'm ranting
But I'm new to this sh*t
I'm tired. I wish I could have a nice bath, some wine, and a nice sleep
But it seems like a dream, because I don't even remember what it was to sleep all night and not pee incessantly

There are a whole lot of us that can relate to those feelings.

I used to have the overwhelming fatigue; started to take low-dose aspirin and the fatigue is actually manageble. The Mayo is doing a study on it.
Inclined bed; stops most of the problems with waking up to go to the bathroom, I don't really understand it and I certainly didn't believe it until I tried it. Works pretty good.

These are just a few of the low cost little things that might help.

I hope you find some relief.

I'm frustrated
I'm fed up
I HATE MS!!!!
I miss my walks around my neighborhood
I miss hot baths
I miss seeing well, esp at night
I have awful fatigue
I fall asleep 5-6pm (get up about 20 times to urinate)
I wake up 4-5 am
And I don't feel rested
I drink coffee to wake up fron feeling groggy
I know I'm ranting
But I'm new to this sh*t
I'm tired. I wish I could have a nice bath, some wine, and a nice sleep
But it seems like a dream, because I don't even remember what it was to sleep all night and not pee incessantly

Maledicte
I'm sooo with you on this - I'm new to this too.....well newly diagnosed but not new to MS.
It's just that all my problems and symptoms have finally got a name - have been having a go round with it for 25 years - asking my GP point blank if I had MS & her saying no.
Result was confusion, depression, diagnosis and now finally my being w/o a GP because I've told her to take a hike.

I've started taking l-threonine (6 mg/day) on the advice of a naturopath for spasticity and I'm not sure what, if anything has improved although my constantly having to pee seems to have abated somewhat.

I hope you find some answers to relieve what you are going through.

Just today, 1/9/12, one of the segments on The Dr. Oz Show addressed the topic of muscles, pain, and spasms. His comment was that minerals prevent muscles from spasming. His recommendation for those minerals and dosages were:

600 mg calcium
400 mg magnesium
200 mg potassium

http://www.doctoroz.com/videos/7-day-pain-prescription

Might be worth a try.

I wish I could try inclined bed, but I just have mattresses on floor, so no option
I want a drink and I'm tired of being judged for it
Neuro suggested that balfocen stuff but I researched it and it can cause diazapam withdrawal symptoms which is what the overpriced evil neuro I first saw said I had (before MS dx)
So I don't want balfocen (sp)
Plus ppl.are saying it doesn't help w/stiffness
So, so far alcohol helps
I am tired of being judged
It works, and I've got this horrible incurable disease
and I'm sick of drs who stereotype everyone, stereotyping me
I KNOW I'm no alkie, and its not like I have codiene to 'abuse'

An MS Lifelines nurse said magnesium stimulates the immune system
and some stuff I read online said it as well, and vitamin b
But I read a dr in UK was giving up to 40,000 ui of vitamin D
and it was slowing MS relapses and could slow down progression of MS
I take about 7000 atm, might go up to 40,000
What else is there for us?
Extremely over priced meds w/patents so no generics
Doctors that only half listen
Judgments from ppl who don't live w/MS
what kind of life do I have to look forward to?
Not much it seems
No support
Constant pain/stiffness/tremors/messed up eyesight
If I eventually turn into an alcoholic, then I go out happy, right?
I'll be the next Charle Harper except I don't like bourbon, and I don't sleep around
Or at least pain free,,not 'happy'

I've read something about vitamin D absorption being enhanced as well by small amounts of vitamin K, boron amd vitamin A - a daily all purpose vitamin/mineral supplement.
I wish jimmylegs or one of the other nutrition gurus was around to help us out here.

Azaeleaprawn wrote:

I'm frustrated
I'm fed up
I HATE MS!!!!
I miss my walks around my neighborhood
I miss hot baths
I miss seeing well, esp at night
I have awful fatigue
I fall asleep 5-6pm (get up about 20 times to urinate)
I wake up 4-5 am
And I don't feel rested
I drink coffee to wake up fron feeling groggy
I know I'm ranting
But I'm new to this sh*t
I'm tired. I wish I could have a nice bath, some wine, and a nice sleep
But it seems like a dream, because I don't even remember what it was to sleep all night and not pee incessantly

Maledicte
I'm sooo with you on this - I'm new to this too.....well newly diagnosed but not new to MS.
It's just that all my problems and symptoms have finally got a name - have been having a go round with it for 25 years - asking my GP point blank if I had MS & her saying no.
Result was confusion, depression, diagnosis and now finally my being w/o a GP because I've told her to take a hike.

I've started taking l-threonine (6 mg/day) on the advice of a naturopath for spasticity and I'm not sure what, if anything has improved although my constantly having to pee seems to have abated somewhat.

I hope you find some answers to relieve what you are going through.

What is w/crappy gps? I had some idiot say (a week before I wad dx'd)
I've been treating MS patients 30 yrs, you don't.have.it
I went in to see him.because stupidly I took a hot bath, next day swollen, couldn't pee for 2 days
Tell me abdominal tumor, go to ER
Nurse knew right away was retention and cathed me
I now have a $2400 ER bill in collections
All because a GP wouldn't do hus job, properly dx and have me cath'd
Even ER doc said he thought it was MS (his best friend has primary progressive MS)
what's w/these lazy gps who just don't care?

munchkin wrote:There are a whole lot of us that can relate to those feelings.

I used to have the overwhelming fatigue; started to take low-dose aspirin and the fatigue is actually manageble. The Mayo is doing a study on it.
Inclined bed; stops most of the problems with waking up to go to the bathroom, I don't really understand it and I certainly didn't believe it until I tried it. Works pretty good.

These are just a few of the low cost little things that might help.

I hope you find some relief.

Found relief, 4 shots of rum
Nowvi'm laying in bed and I think.I might be able to sleep
Usually my legs ache so much I can't
Of course I'll prbly be up.all night urinating, lol, but at least no leg stiffness and pain
I wonder how many of us are becoming alcoholics b/c our neuros don't
listen and give nothing for pain?
So its like....soooo....you won't help us so we self medicate
I personally think that's really sh*tty
I DON'T want to turn into an alcoholic but they aren't helping
An ms lifelines nurse said a ton of her patients get no pain meds b/c neuros don't listen or 'are against pain meds'
I say they need to stfu, stop judging us, and live one day in our shoes
If docs could just be us for 1 day, I think their outlooks would change