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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 03-26-2011, 07:30 AM
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nightflyer nightflyer is offline
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Help with scissoring info.

Hi, haven't been on much lately...dealing with something new. Scissoring and more solid numbness over entire body except my head amd twisting like a pretzel at night. Although, swallowing is off and finding enough air to breathe while talking is hard too.

Anyone experienced this before? Would you share? Thanks for any input.
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Old 03-26-2011, 07:11 PM
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I'm not sure what you mean by scissoring, snuzzer. Is it like spasticity, where parts of your body are stiff? Have you talked to your doctor about it?

I have dystonia, muscle stiffness and pain, mosttly in my neck and shoulders. I get Botox shots for that every couple months.
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Old 03-27-2011, 09:31 AM
rdmc rdmc is offline
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I was having some mild scissoring and since I got the pump, am working really hard in PT to correct it.

From what I've been told it's due to hip flexion spasticity. Maybe a PT assessment might be in order. You've got to keep an eye on hip spasticity because it can create a host of other problems.

If I remember correctly you didn't have success with your last pump trial...right? Any thoughts about trying it again at a higher dose? It has given me ROM so in PT I'm at least able to start working on some of the issues that the spasticity has caused.
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Old 03-27-2011, 05:39 PM
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Rdmc,

I have thought about trying the test again but when I found out that my Drs. have never heard of anyone flunking the test?????????????? Probably won't. I wish the pump was the answer. I just did PT but had to quit because of spasticity increase. I don't know. I am looking for a new neuro. Will see...


Des,
Stiff, yes then legs stay tight together when laying down and my left foot turns towards my right foot and the lower leg/foot wants to cross over and stay there.

My body wants to be stick-straight and rigid arm muscles are tight hands are stiff to bend fingers and pain. I take baclofen and gabapentin for it but neither is very effective. My neuro is aware of everything and by phone his nurse said to "up" my meds. He's not very interested in a 15 yr. old case of MS.

I thought Dystonia was muscle spasms and twitches, one Dr. thought thats what I have because my meds don't work for me. Thoughts? Dystonia all over my body, is that possible even? Curious...
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  #5  
Old 03-28-2011, 07:01 AM
sniper762 sniper762 is offline
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everything is identical for me, snuzzy

look at the bright side. scissoring is an excellent form of birth control
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  #6  
Old 03-28-2011, 01:45 PM
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Quote:
Originally Posted by sniper762 View Post
everything is identical for me, snuzzy

look at the bright side. scissoring is an excellent form of birth control
TOO FUNNY!!!!!
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  #7  
Old 04-02-2011, 07:50 PM
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Hi Snuzzer and sorry to hear that you are getting tied in knots.

It sounds an awful lot like dystonia, and if it is, then it needs to be brought under control. It can cause an awful lot of musculo-skeletal problems if left to it's own devices.

That your PT increased your spasticity tells me that the therapist was not knowledgeable in working with spastic or dystonic patients. One wrong move with a dystonic patient can cause the dystonia to take over. A PT should know this.

Baclofen is often the treatment, as is Botox, acupuncture, massage.

I hope that you are able to get some relief. My feet go into "tone" often and it is very, very painful. I've had great success with acupuncture and also with a dear husband who knows exactly what to do when a foot goes crank. He knows the exact spot to press on to get it to release. It hurts like mad, but for me beats Baclofen any time.

Have to add lucky me, my son just got his graduate degree in Kinesiology. I'm his favorite test subject and there are times when he's asked me "can you make your feet go into tone for me?" Oh, sure.
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Old 04-04-2011, 08:54 PM
klew2 klew2 is offline
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Botox rocks!

Hi Snuzzer,

Sorry to hear about the spasticity issues. For scissoring, I've had really good results with Botox -- it blocks nerve transmission when peppered into select muscles (adductors, griselis (sp?)). It might take special approval fm your insurance, but the FDA approved it for MS treatment so it shouldn't be a prob.

Relief starts after about 2 weeks and increases for about 6 weeks. After that, your body starts to figure out a workaround and things get worse for 6 weeks unil you re-up. You can't do it more frequently than three mos because you'll start developing antibodies.

I'm in my second year and my results have been as follows:

Fall2009: 6 weeks improve, 6 weeks tightening
Winter2010: almost no effect at all (winter's my worst time)
Spring 2010: 7 good weeks, 5 weeks tightening but less over all
Summer 2010: 8 good weeks, 4 weeks tightening but less over all
Fall2010: 6 weeks improve, 6 weeks tightening
Winter2011: 3 weeks improve, mostly little help

I would definitely try it out. It's tremendous, esp synched with quarterly steroids 4 weeks in.

Good luck,

K
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  #9  
Old 04-09-2011, 06:21 PM
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Quote:
Originally Posted by snuzzer View Post
I thought Dystonia was muscle spasms and twitches, one Dr. thought thats what I have because my meds don't work for me. Thoughts? Dystonia all over my body, is that possible even? Curious...
I was told that dystonia is tightening muscles, which gets worse over time. With me, it's mainly in my neck and shoulders, to the point that I haven't been able to look over my shoulders in months. Not only was it very painful, my neck has stiffened so much that I physically cannot move it. Even turning my head sideways to look at something next to me is getting harder to do.

I think it can be in any muscle in your body. I've noticed my back seems to be stiffening more than usual lately.
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