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Posted: Fri Jan 07, 2011 4:31 pm
Spasticity, stiffness in my right leg and the associated footdrop, is my key symptom - well, plus fatigue and poor balance. I've tried pretty much everything: lots of stretching, power plates, baclofen, tizanidine, gabapentin, FES and, today, starting on dantrolene. I was hopeful about trying Sativex, but my UK care trust have declined to put it on their formulary. If you jump thru certain hoops with an elephant's ear on a bun I think you might be able to get it.
Has anyone got any success stories re beating their spasticity? I'm sticking to the Jelenik project hoping this will help, but any other ideas would be much appreciated.
Posted: Fri Jan 07, 2011 5:52 pm
There's a thread somewhere about Magnesium. Try to search for it. Also, you've tried everything - have you tried normal exercise? It helps me.
Posted: Fri Jan 07, 2011 6:17 pm
I do certain exercises every day, one includes sitting on floor legs out straight and lean forward, I can grasp each foot around the middle as part of my stretching, this helps keep the muscles from pulling short I find.
I also do balances stuff, like stand on a pillow on floor feet nearly touching, once mastered that do it eyes closed. I do it for about 1.5 minutes. I have just bought a wobble cushion do now stand on, boy that is hard, forget eyes closed, eyes open is well hard, have to have stuff handy/close to grab as would fall otherwise.
So I continurely look for subtle ways to challenge my capabilities.
Best thing I bought for improving my balance was a Wii fit board, the balance games on that and particularily on the Wii fit plus CD really helped me loads. I saw a slow but gradual improvement over the year I used it lots for, every day more or less, not for long though as tiring on leg muscles.
Posted: Fri Jan 07, 2011 9:39 pm
I have subtly changed the way I walk based on Tai Chi and advice from my physio - it takes a bit of practice but has made a big difference to my spasticity and my balance, that and the Jelinek program of course!!
Tai Chi has taught me to transfer my balance before lifting the other foot off the ground.
My physio advised me to bend my knees slightly when I walk - otherwise I looked like a baby learning to walk. Slightly is the key here! This is particularly effective on slopes.
It does take a bit of practice, and I do need to be mindful of how I walk.
Posted: Sat Jan 08, 2011 8:33 pm
I spent 6 months taking avonex and mid way through this period i started gettting contracted muscles in my thighs, i was given various muscles relaxants which worked for a few weeks and then the good effects wore off. My neuro examined me and didn't feel it was spasticity.
Any way due to this effect and others I stopped avonex ( as a trail to let side effects fade ) and my last injection was the 18th september, since then my thighs have slightly worsened.I generally wake in the mornings with aching muscles,sometimes wake at night because of them and throughout the day they can feel a little heavy and tired. My neuro felt this was maybe the effect the avonex had on the nerves in my thighs.
I am now taking liorsal / baclofene- a low dose now 10mg twice a day, but i feel the problems is worsening still. Its not a huge problem but something i didn't suffer from at all before diagnosis last year or before avonex came into my life.
I am a completly mobile person who was diagnosed after one episode of optic nerve problem.
I would aprreciate peoples thoughts on this - has anyone heard of the nerves being affected by the drugs ? Could it be the start of a spasticity problems or general MS pain ?
I am staying off the avonex but i think i will give copaxone a try - I have changed my diet, joined the gym and will use drugs too.
Any ideas please ?
Posted: Wed Jan 12, 2011 2:28 pm
Alex wrote: There's a thread somewhere about Magnesium. Try to search for it. Also, you've tried everything - have you tried normal exercise? It helps me.
Don't know if it's normal, but I have weekly physio and use Power Plates every day for vibration therapy. Can't walk very far without extreme fatigue and severe tightness in right leg, so lots of activities pretty much impossible.
Posted: Wed Feb 23, 2011 9:39 am
It is good to know that there are others out there who have this leg stuff happen to them and that it is not just my imagination though imagination isnt ususally this stiff.
I am on Rebif, and have been for about 15 months.
For about the past 6 months my legs have been growing increasisng sore, particularly my thighs. It feels like i have worked them to hard at the gym but it is at its worst first thing in the morning when i first get up from lying down in bed. those first few steps are the worstand yes the description of a baby first learning to walk is very apt. But across the day it comes and goes. Obviously I am best sitting down but then getting up is worse. Combined with this it feels like my left knee 'locks up' and I end up walking like a wild west gunslinger, really rolling my hips to get my legs lifting.
I have had a few consults with a physio specialising in neuro issues like MS but it onlt seems to have made it worse.
I have just started Dr Jelinek's diet and I hope for some relief through that altough I am still getting the hang of what is ok and what needs to be left out. (Note to self - shop bought Soy Icecream is out
Well I will keep at it and with any luck will be able to report success soon.
Posted: Wed Feb 23, 2011 10:54 am
I've been finding pilates very helpful for all my body control issues - sounds like you're already trying a lot, but testing out pilates is highly recommended
Posted: Thu Feb 24, 2011 1:21 pm
Thanks for the tip. I have been considering a pilates or tai chi activity. it is just a matter of fiding the time... thanks again.