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Whitsend

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The following was sent to me today from someone who works at this hospital. This is a test for spinal cord injury patients. You may say, 'What's that got to do with us?" Well, a lot. Most spinal cord injury patients take a drug for spasticity such a baclofin or xanaflex. Those are the same drugs that most neurologists prescribe for relief of PLS symptoms. If you are like me, you cannot take baclofin. Maybe hope is on the way. Unfortunately, this is a two year test.

For anyone not in the U.S. (like Olly) you might want to check to find out if tolperisone is available where you live.

Here is the announcement:

Carolinas Rehabilitation to Study Drug for Spinal Cord Injuries
Carolinas Rehabilitation is the only North Carolina hospital, and one of 10 nationally, to participate in a study of a drug to treat muscle tightness that frequently affects patients with spinal cord injuries.


The condition, called spasticity, can cause pain, limit range of motion, pull joints into abnormal positions, cause uncontrollable muscle spasms and contribute to sleep disorders. Researchers also suspect the condition could prevent patients from recovering from spinal cord injuries by blocking the body’s ability to generate new nerve pathways. More than half of all spinal cord injury patients suffer from spasticity.

The drug, called tolperisone, has been used for years in Europe, Asia and South America, but has not yet been approved by the U.S. Food and Drug Administration for use in the United States. It appears to be a significant improvement over drugs currently used in the U.S. that can cause drowsiness. That side effect is not present in tolperisone, which controls the excitability of motor neurons and the spinal cord’s root reflexes.

“We need to find a better way to treat patients with spasticity, given the number of patients who can’t tolerate existing medications,” said Dr. William Bockenek, medical director and chairman of the department of physical medicine and rehabilitation at Carolinas Rehabilitation. “The goal of the study is to show tolperisone is safe and tolerable for patients, and that it provides adequate relief of symptoms.”

Carolinas Rehabilitation will enroll eight to ten patients in the study, which will last two years. Those eligible to apply are men and women between the ages of 18 and 70 who have had a spinal cord injury for at least six months. Women must not be pregnant or planning to become pregnant. Participants chosen will be randomly assigned to one of two groups – those receiving the drug and those given a placebo. Individuals interested in learning more about the trial are invited to call Marybeth Whitney, RN, at (704) 355-1409.

Nearly 200,000 Americans are living with a spinal cord injury that results in a temporary or permanent change in normal function like mobility or feeling. Spinal cord injuries can be complete, where the body loses all function below the injury, or incomplete, where some function remains.

Within the first six months after injury, function may be regained. After six months, the likelihood of regaining function is significantly reduced. Two-thirds or more of Americans who suffer spinal cord injuries are permanently paralyzed.
 

Michael B

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Does anyone out there have any information on the Knopp Study for ALS?
 

olly

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thankyou

i am ok with baclofen it has never caused me any problems only if the spasms have been severe and my dosage has gone over 60mg.
its good to learn about any other options,maybe this drug would work better.
i will see if it is available here in the uk:-D
 

Geo

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Well for starters These drugs are Muscle relaxers .there not cures by no stretch of the imagination.You could take Quinine which i a muscle relaxer for all its worth .The 64,0000 question with a muscle relaxer is
HOW MUCH IS ENOUGH or HOW MUCH IS TOO MUCH . Spasticity is the Keyword here, and the only answers so far are MUscle relaxers . This is a BIG SHAME ON OUR MEDICAL COMMUNITY ,Suppose to be the best the world has to offer .I SAY SHAME ON YOU . And thats My 2 cents worth .Geo
 

olly

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geo

your 2 cents worth is always worth it,you crack me up sometimes:lol:
dont ever change.
 

Geo

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Thanks Kiddo ,I'll try to not change Gotta say whats on my mind ,Maybe someone will wake up and work at finding a Cure instead of More Bandages ,Dont need Bandages need a cure ,Thats going to mean someone has to think out of the Box for once . MY 2 Cents Geo
 

olly

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hi geo

i hope you and your good wife are keeping ok.
you dont take any meds for the spasms and stiffness do you?
muscle relaxers are ok but they can cause more weakness as a side effect of long term use.
you have to weigh up the pro,s and con,s and choose the lesser of the two evils you can live with.
in the begining the spasms,clonus,myoclonus were my biggest problem.
then weakness set in,i cut down my baclofen a while ago and the myoclonus is becoming a regular accurance now.
you just can,t win sometimes:roll:
 

Geo

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Well for starters i feel like rubber and cant function in a normal manner .So now i take Quinine Only .I was on Tizanadine .Cant do Baclofen at all . Tried Neurontin, Gabapentin .So Spasticity i deal with ,living in florida really helps its warm here ,but when it gets in the low 60s im stiff so i stay in until it warms up ,about 11:00 ish .Like one doc said ,you need some spasticity to stand upright so its a balance . We do OK, shes still working im retired fortunately . I try to keep house best i can and do some yard work .Geo
 
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