This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm healing after CCSVI intervention and as my nerves are coming back on line I'm enduring spasticity ,,, both the twitches at night and the stiffness in my legs during the day. I'm thinking of trying Baclofen ; any thoughts about this? I'm using 5mg of Diazepam but it isn't effective....
I am so pleased I had the venoplasty... life is GREAT! and improving daily. I'm lucky.
Thanks for any input.

ask your dr, I myself take it but sparingly, at night when I go to bed.

I'm off to see my GP next week and that was the topper on my list. My thought was a night before bed ....
Does it help with the leg stiffness during the next day?

No for me it usually wears off by the morning

My husband used to take it, but stopped as he was told that it increased fatigue, which is a big issue for him. Trying to get off all prescription meds anyway so this was the kicker. Didn't seem to increase the spasticity that he had at the time noticeably, but 18 mths down the track there is definately more spasticity than there was.

For me, Baclofen is a gret help at night because of leg over-activity (maybe restless leg) although this doesn't happen that frequently, this is a help for sleep with me...I do know other's have had great result throughout the day ( they even have that pump now which I do not know that much about)...when I tried it during the day, even at lowest dose and a half of that I should add...it seemed to make my already weak legs EVEN weaker, so while there was temp. mild relief from spacticity, the result for me was weaker limb... Hope this helps someone of us out there! God Bless us all! Amen!

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GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Thanks for the thoughts.... I'm already weak of limb. perhaps staying with the 5mg;diazepam for the night is the best to be enjoyed...... And walk more,,,,,, I'm investing in a pair of walking poles. going to try to improve walking by just walking,,,, perhaps better than a drug 'loosener'........
thanks again for input.
keep on keeping on!

hi betsy,

just wondering - ever had your magnesium level tested to see if it matches an ms patient level vs a healthy person's level? research links magnesium deficiency and ms.

pharma stuff is fine but if you correct your electrolytes first, then you know what you're really dealing with.

ms patients have mag levels lower than healthy controls.

the 'normal range' is 0.70-1.10 mmol/L, but healthy control levels are at least 0.90 mmol/L.

full text:

about the misdiagnosis of magnesium deficiency:
http://www.jacn.org/cgi/content/full/23/6/730S
[quote]In patients with Mg serum values lower than 0.9 mmol/l Mg, magnesium supplementation is recommended; for patients with values lower than 0.8 mmol/l, starting Mg supplementation is necessary. We recommend that a mMg serum value of 0.9 mmol/l Mg be considered as the lower reference limit, in evaluating symptoms or diseases suspected as being associated with Mg deficiency. In this case, Mg has to be used as a first choice therapy. When symptoms of the MDS are found, patients with serum values of less than 0.8 mmol/l Mg, or better 0.9 mmol/l Mg, ought not be erroneously declared normomagnesemic.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I can only tell you what I have done myself. I took baclofen for years and it was the first thing to go when I was liberated. One of the reasons, and I'm sure this is downplayed, is the effect it has on bladder symptoms. It makes them worse. Mine has been fine for months now, and I'm hoping the poor bladder control I had stays away.

Sure I still feel a bit stiff sometimes, but I think I'm still improving since August. My belief in this comes from occasional comments by people who do not see me often, the way my family does. So still a bit, very occasionally, and not enough to make baclofen worth while. But then, when I started taking it, I could still walk. I can't play guitar yet, either.

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Okay, my next blood test is going to be for magnesium levels. thanks for that info.....I have been supplementing magnesium but not a significant amount to really change any level deficiency I might have. that question will be answered right soon.
Gosh; I should have asked you folks these questions earlier in my MS life. Liberation is grand.... the way back though not easy is worth every step.
I can't play guitar either, but I did manage to dance a short boogie.... yippee!!!!
venoplasty for all!!!

betsy,

I suffered badly from spasticity for about a year and half. The spasms were triggered by movement and I will have them day and night.

The debate among my neuros was to find the cause, they hadn't seen a person with my kind of lesion affected by spasms so badly.

They tested my magnesium, calcium, potassium and phosphorus levels with blood tests. All these can contribute to spasticity but my blood results were normal.

In terms of medication. My main neuro was very reluctant to give me baclofen because in his opinion it causes muscle weaknesess, a problem that I did not have.

Instead I was put on Tegretol, which worked okay but not perfect. Downside is that causes sleepiness (as blaclofen as well).

For a while I tried lamotrigine. This worked worse than tegretol, so I stopped taking it.

I was about to be put on lyrica, but then I got treated for CCSVI and thankfully my spasms stopped.

I recently had a hair tissue analysis to check my mineral levels. Some docs believe that the best way to test minerals and especially calcium is with hair, not with blood tests. My calcium levels showed quite elevated from my hair analysis. I no longer have spasms but I do have to reduce the calcium.

You might want to ask your doc about sativex. It is a cannabis based drug that seems to control the spasms.



Rox

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Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

Moving right along.
wow so much food for thought.
About sativex. I use the real thing, got my govie permission and it works about the best of anything . the only con. I get 'stupid' after a toke. Oh well better silly than spastic.
I'm hoping my body works through this spastic phase in the recovery. I have noticed if I wear sox to bed and my feet are overly warm I don't twitch; that has to be better than any of the drugs,,,
I have talked with a homeopathic doctor friend and she told me to up my electrolytes... also around the quilting table the word is 'put a bar of soap in the foot of the bed, not anything special, and the twitching will stop'. I was feeling twitchily desperate,,, however it's been 5 nights now with the bar of soap tucked into the foot of the bed and I still haven't twitched. Go figure. wuowuowuo....So big pharma move aside between Venoplasty, pot, and a bar of soap I might beat this spastic phase.....and a phase it is. I refuse to live here for long.

'up the electrolytes' sounds sort of good to me... or, balance them. magnesium would be one to 'up', as detailed above. no magnesium in soap to my imperfect knowledge! ...although epsom salts baths are definitely one way to absorb magnesium salts through the skin. use with caution according to package directions.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I have a bar of soap in my bed too since 2 years; and all cramps/twitching also vanished.... If I take it away; it start again after 2 nights... I just thought I was "psychologically insane" but now at least we are 2

So... the bar of soap, does it have to have the packaging off? Do you have to be touching it?