Spasticity Talk notes

[Lulu54]

Did anyone else catch the talk on Spasticity this week sponsored by Shared Solutions?  It was full of information and I could barely keep up with the note writing.  Dr. Matthew McCoyd, Loyola University,  was the featured doctor and he was excellent.

He gave several points in medical terminology and then told us what it really means, which I appreciate.
Unfortuantely there was one caller who monopolized a good 10-15 minutes with his questions, that ticked me off, but other than that it was time well spent.  I don’t know why these doctors let the callers go on and on, when we all know they don’t let that happen during appointments.  LOL

Here’s the meat of what Dr. McCoyd had to say:

Too often with our neurologists the conversation centers around disease modifying treatments and not the treatment of symptoms

He gave the long technical medical student definition of spasticity and then gave us his condensed version  : spasticity is the resistance of muscles to being moved.  That resistance can be seen as weakness, clumsiness, stiffness and even speech problesm.    Spasticity is caused by upper motor neuron lesions and isn’t exclusive to MS - spasticity is also seen in stroke patients, head injuries, and cerebral palsy.

I really liked his explanation about spasticity that it is similar to our cars.  We push the accelerator to go and the brake pedal to stop.  If we press both we get the equivalent of what our muscles are doing with the spasticity.

Spasticity needs to be treated only if it impacts daily activities.  If it doesn't bother us, then we don't need it treated.

Legs and arms are the most common places for MS spasticity, but it can occur anywhere in the body, including vocal cords. 60-80% of PwMS have problems with spasticity.  

I always tell you I am no expert on anything and I continue to learn with every one of the teleconferences - I learned from this one that the tool  used to rate our spasticity is the Ashworth Scale - I didn’t know that existed.  If you google the term you will find lots of  really great explanations and examples of how it works.

In choosing how to treat spasticity it has to be evaluated as to how much spasticity is acceptable vs interfering.  We need some spasticity for our muscles to work correctly.  He also said we need spasticity to help prevent blood clots and edema in the legs and ankles.  

He urges us to look for what triggers our spasticity.  He said they know spasticity increases as our day grows and by bedtime many MS patients have their worst spasticity.  Other sources of pain, anxiety and heat can also be triggers.  Dr. McCoyd also said it is important to note when the symptoms of spasticity occurs.  

There are three treatment options for spasticity - physical therapy, drugs, and surgical options.  

Physical therapy should be part of spasticity treatment.  Things like range of motion and stretching exercised can reduce stiffness.  The benefits may only last a few hours and you may have to do the PT exercises several times.  If you have spastcity in your sleep, you may want to do stretches right before bed.  

As part of the physical treatment, he also suggests  hot/cold packs on the affected area, aerobic and walking exercises in pools, acupuncture, tai chi, and bio feedback to change the pattern of spasticity.

Prescription options include Baclofen, which is the most common spasticity drug.  - It works by blocking the pain pathways but can cause additional fatigue and can sometimes worsen the weakness of muscles.  He was thorough in reminding everyone on Baclofen that withdrawal from this drug must be done with the help of your doctor and can cause serious psychiatric side effects if done incorrectly or cold turkey.  

Zanaflex is the second most commonly prescribed drug for spasticity.  It does not cause muscle weakness and has no side effects if stopped suddenly.  He said Zanaflex becomes more effective the longer you use it rather than the body becoming accustomed to It and needing more.  The one side effect that can cause problems is some people develop heart arrhythmias.

Other drugs that he listed for use in spasticity include: Valium, gabapentin and tegretol.

Botox injections have been approved by the FDA for upper limb spasticity and Dr. McCoyd said it takes 4-7 ays to see the effects after the injections.  Botox remains effective for about 2 months before it has to be injected again.  

Dr. McCoyd said all the pharmaceutical treatments should be combined with rehabilitation for stretching.  

He talked about the success that is being had with Sativex in both the UK and Canada.  Unfortunately this spray drug that is a derivative of cannabis (marijuana) is not approved in the US but he did say the FDA is looking at it .  

Under surgical options he discussed the intrathecal  baclofen pump.  The pump is surgically implanted and delivers the baclofen directly to the spine and the brain, and he said the advantage is it needs much less drug to be effective.  The pump is refilled by the doctors every few months and it lasts 7-10 years before it needs a new battery.

In the Q&A section he had some good questions.  One caller suffered with restless leg syndrome in his sleep and he suggested that he try doing stretching exercises immediately before going to bed.

A caller suggested her spasticity improved when she began Ampyra, which is FDA approved for walking.  Dr. McCoyd said that they have also seen and heard of that off-label  benefit.  I found this interesting to add to the growing list of off-label use for Ampyra which already include heat sensitivity and optic neuritis.  

And then the caller who thought this was his private consultation suc ked up most of the rest of the time. Despite his call, it was a great use of time last night.

[metalbender]

Besides the complaints of musle aches and charlies, my doctor looked at my skinny legs and used the term increased tone...He actually looked at my legs and could see spasticity....Also, I can't walk heel to toe...This was when I was first admitted in the hospital...He immediately got me on baclefon and gabapentin even though I wasn't diagnosed at the time..Since some of my tests weren't back yet...

Michael

[supermum_ms]

I read your serious notes then couldn't help my self laughing with Mary, then laughing at my self when i had to reread it because my brain lost what i was going to post, life is a bit of a hicup.

I am loosing my brain, lol i use to be a public speaker, training video's, computer progaming, write books lol I did once know how to spell and blast now i loose control of my tongue the more I talk, so i cant even talk the hind leg off a donkey anymore. I'd love to stuff the genie back into the bottle but err what was i talking about? Do you have my car keys? No? Spasticity thats it ahhhh back on topic lol

"spasticity is the resistance of muscles to being moved.  That resistance can be seen as weakness, clumsiness, stiffness and even speech problesm.    Spasticity is caused by upper motor neuron lesions and isn’t exclusive to MS - spasticity is also seen in stroke patients, head injuries, and cerebral palsy."

I think one key point is 'Adult onset' because you can have all or some of those issues from childhood. ahhh i still dont quite know how spasticity is determined, anyone got the details of what constitutes spasticity?

Cheers......JJ

[Sidesteps]

I am learning what this feels like in my body now. I have some spasticity that has shown up in my shoulder. I can tell it's not injured. I find resistance in moving it and it doesn't want to allow me to move my arm above my head; whereas the other arm I'm not having any trouble. There isn't any trobbing pain. It's just an uncomfortable resistance to a normal movement of mine.

I have stiffness in my right hand, right leg and now my right shoulder. Hmmm ~

[meg321]

Thanks Lu,

that was very interesting and I need to read it again.  I really appreciate that you write in small paragraphs otherwise I just can't read ..  

I have signed up for teleconferences and have forgot them even at the last minute.   Its frustrating and I even have alerts on my computer..

hugs meg

[lovemy6monkeys]

Thank you for taking notes, Lulu! I always learn from your posts :-)
~Jess

[twopack]

Oh yes the recorded presentations are wonderful (especially since you can sneak away to prepare a snack when you get to the caller who turns a question into a virtual visit - seems there's one at almost every presentation).  

The sad part is, once I've saved them I tend to put off listening to them day after day in favor of whatever has my attention for the moment.  My queue got pretty big before my mega computer crash last year.  Sadly, I lost my entire What's What in Mary's Computer Catalogue.  

I turned down all requests to use my sad story to spike sales of data backup software.  It was a good choice as I ended up using that time to quick start a new queue.  I presently have nearly enough volume to engage me throughout retirement (assuming retirement at age 66, a normal life expectancy, nothing else distracts me before then and this computer doesn't follow its predecessor’s example).  I still have unprotected que.  I wonder if I could have gotten free backup software in exchange for telling my tale.

I've had a nightmare or two suggesting I already possess some of the answers I've searched for.  I fear they patiently await discovery in a file eerily reminiscent of a retirement bucket.

Sorry.  Did I fall asleep at the keyboard again?  That why my mother cancelled my accordion lessons as a kid.  Some things never change.  

Nope, not on steroids anymore!  I really have no idea what’s gotten into me here.  This is an important topic Lu and you know where I stand on our need to educate ourselves regarding MS.  Guess my brain censors went on vacation this afternoon.

(name withheld at request of author)

[Lulu54]

Mary,
one of my favorite sayings is....

of all the things I've lost, I miss my mind the most.

My first professional job was in journalism - I worked as a stringer for the local paper, and even landed a front page story once.  Big stuff  when I was only 17.  I can still note take and do the who, what, when, where, why and how of the story.

I'm glad you found the notes useful.
L

PS - I really like the ones that are recorded and you can listen to them at your convenience.  I have a bunch of those stacking up in my que.

[twopack]

Thanks Lulu.  I had this one on my calendar last night and one about emerging therapies on Wednesday.  I thought I would get to listen to plenty of tele-conferences this month while I was on vacation.  Unfortunately, my brain has been shutting down after about six in the evening and I completely forgot about both of these until it was too late.  How's the saying go?  A mind is a terrible thing to waste.  Oh yeah.

Thanks for the great info.  Ever think of a career in journalism?
Mary