Leg spasticity!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Leg spasticity!

Postby Coolcatcarrie » Fri Jan 28, 2011 11:10 am

Has anyone lost the spasticity from your legs after liberation and then been real jelly legs? It is really good right? I'm just not a patient person and I need to be with getting some muscles in my legs! Any words of wisdom? X
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spastisity

Postby Stayfit » Sat Jan 29, 2011 1:56 pm

Brain plasticity is the natural process by which the brain rebuilds after damage. Those of us with MS, our brain does not send strong messages to our muscles. I have found that working, exercising specific muscle groups relieves spasticity and helps to return function. It is as if we have to remind our muscles of there job, since they do not receive strong signals from the brain. Do not strain, just exercise with some effort and observe closely to determine how you are tolerating. This a slow process but my experience is significant function does come back.
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Postby ykonstan » Sat Jan 29, 2011 3:11 pm

after the procedue i have a very strange changes. During a day for about 4-5 hours when my body's temperature is normal (for some unknown reason) i feel almost ok - i raise my legs and walk without spasticity ( well almost), then my spasticity comes back and i feel awful again.
If some exircise can help - can u share what is it? i would love to do it if it is really helpful. thanks.
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Postby Stayfit » Sat Jan 29, 2011 4:32 pm

I get on my stationary bike. Pedal with low tension not much effort mostly looking for smooth movement for about for about 10-15 minutes. Its seems my dormant nerves and muscles are asking to be activated. This was mostly my problem before procedure. Only happened a few times since and none in last 30 days. If you research brain plasticity and muscle memory it could help to better under stand what you can do to help the healing process. Let me know how it goes.
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Postby Coolcatcarrie » Sat Jan 29, 2011 4:57 pm

Thank you very much for your help! Carrie
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Postby krcmum » Sat Jan 29, 2011 10:50 pm

Interesting topic. Spasticity in my legs is by far my worse symptom. I can't wait to be able to afford Liberation in the hope that I will get some amount of relief from it.
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Postby Stayfit » Sun Jan 30, 2011 2:27 pm

Exercise seems counter intuitive with MS. Fatigue is such a large issue. My experience is that if do physical training without exertion just some effort over time you build stamina, strength as you identify specific weak muscle groups that need strengthening. No pain no gain -DOES NOT APPLY- WHAT IS APPLICABLE- IS IF YOU DO NOT USE IT YOU LOSE IT. ( almost 40 years with MS) IF you can begin before procedure it seems to me that benefits are more readily identifiable. ie, for one of my exercises, I could not get beyond 5 minutes for 6 month. Left Leg was too weak. 3 months post, up to 17 minutes. Knowing that improvement is a huge boost psychologically and as well as helping to explain my improved mobility. Also another important measure is my blood oxygen level, was low, is now normal. I would say that getting the procedure is not like taking a pill for a headache. Be proactive learn, discover(brain plasticity and muscle) what you can do to help to speed the healing process now that we have learned that poor blood flow effects MS.
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Postby 1eye » Sun Jan 30, 2011 7:36 pm

krcmum wrote:Interesting topic. Spasticity in my legs is by far my worse symptom. I can't wait to be able to afford Liberation in the hope that I will get some amount of relief from it.


Going soon for follow-up. Last night I had twitches in my legs so bad it kept me fully awake. I got to sleep about 10AM. With me it seems very heat-related, and it seems being under a duvet and lying down are an unfortunate bad combo for me. I spent the night sitting upright in my pajamas. Because it seems to make a definite difference whether or not I am upright I tend to think I may have a stenotic jugular again. My DUS will tell me if it is a lost cause or not. Dr. Siskin had some trouble with my left internal jugular. Because of my increased heat-sensitivity I still suspect viscosity and reflux are my culprits. With an individual it is partly a guessing game. That's why science and stats are so important. I hope our guesses are getting to be more educated. But every patient is different, and it is up to doctors to guess well.
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Postby sou » Tue Feb 01, 2011 4:27 am

Let's be honest.

Spasticity can not be cured or even treated without ruining the sufferer's life even more than it already is. It is not a mineral deficiency. It is not a symptom that will ever go away, unless it is caused by inflammation. Physical "therapists" (and all other kinds of quackers, including neurologists) will only make some bucks out of it, without curing it. Some could manage some of its complications, if you are lucky.

Drugs? lol! They have nasty side effects and won't help you walk better. They will only ease the pain, at the cost of ruining your mood, kidneys and liver.

So, you have spasticity, you die with it. Period.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Coolcatcarrie » Tue Feb 01, 2011 4:40 am

Well I've lost mine and now am building up my muscles.
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Postby sou » Tue Feb 01, 2011 4:47 am

Because it was caused by inflammation, like I said at the post above. It is quite unlikely, in general.

My strong belief is that whatever disease or symptom does not heal by itself and can not be cured by antibiotics or amputation, can not be cured at all.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Coolcatcarrie » Tue Feb 01, 2011 4:53 am

Well with respect, it has only been 2 weeks since my procedure but spasticity in my legs really was the first to go! And it was quite bad! Nothing is impossible!x
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Postby bluesky63 » Tue Feb 01, 2011 7:15 am

One great thing about having less spasticity is that since you're not fighting against the muscle, you have less fatigue.

I was *thrilled* to have relief of the spasticity in my tongue. I could actually move it around my mouth and teeth without spasms. Yes, it is possible! :-)

But yes, you have a weak muscle under there when it's not masked by stiffness and spasms! And it is really hard to build up that muscle without overdoing it. I found myself just shaking and trembling with weakness really easily.

So I hear everyone saying that the thing to do is to try a swimming pool because it's supposed to be much easier to "work out" in water. I still haven't found a pool, but maybe you can look for one, plus a PT who can help. :-)
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Postby 1eye » Tue Feb 01, 2011 12:17 pm

Update: after a PM exchange I realized I could afford one Baclofen, even though I had sworn off them after Liberation. I'm not healed overnight: big surprise after 26 or so years. They help you sleep, too. I realized "as needed" is different from and not nearly as toxic as "two a day, rain or shine." Anyway I got a good night's sleep last night. Can't go to Barrie for follow-up on account of the impending big dump of snow. Oh, well. If I lose my bladder, it's only temporary.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Stayfit » Tue Feb 01, 2011 4:09 pm

Would anyone be interested in exchanging detail of their physical training and progress?
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