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Clearwater AL

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PALS
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12/2018
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Get Real
I don't contribute much anymore but I have read some threads about clonus here and elsewhere. Clonus does not occur on it's own. It has to be triggered in some manner, like a strike on a reflex point. There is a You Tube video demonstrating clonus... any Neurologist who may have watched it is smiling from ear to ear. Clonus is not a definitive sign of PLS but can be present...equally as rare as the disease itself. (Remember, PLS is rarer than ALS and there is still no definitive path to diagnosis but 3 to 5 years of observation and exclusion protocols). Generally clonus is a sign of spinal cord injury/lower motor neuron problems placing it more so in the ALS diagnosis. Anywhooo... hope all are doing the best that best can be for you.
 
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Hi Al, it's nice to hear from you :)
Becky
 
Hey Becky, thank you. Every once and a while I come out of my hole (where several probably wish I'd stay) but I do try and catch up on the Forum occasionally. It's interesting reading sometimes to say the least. I've tried so hard but I've finally given into the walker. But... I never forget the members who have truly been diagnosed with ALS. To That... I'm fine. Thanks again.
 
Clearwater it is good to see a post from you. I read wowing how you were doing. We may not always agree but that's how life is. Good to hear from you.
 
Likewise, Al, always glad to see you here.

Best,
Laurie
 
Jaw clonus was an early symptom Chris had, though at the time we didn't know it. All he knew was the trigger was any breeze, even a warm one, hitting him would send his jaw into clonus.

I didn't see it happen for some months, he would say his teeth would chatter.

When he was diagnosed the neurologist triggered it with the little reflex hammer, and ended up getting 5 others in to observe it.

Later, he would get leg clonus and it was triggered by position, usually would start when we were about to get him into position for a standing transfer. Moving the leg slightly would usually stop it.

Clonus is also not a definitive sign of ALS, but is often one of the many symptoms.

Good to see you here mate.
 
From what I understand, Clonus is UMN in origin ;"Spasticity is increased muscle tone, hyperactive stretch reflexes, and clonus (an oscillatory motor response to muscle stretching)". I have normal emgs currently, with an irritating amount of Clonus in lower limbs. Putting on socks, shoes etc illicits this response, or banging either foot down on floor sharply. I can always stop it by a change of position in those circumstances. But walking along with crutches esp when tired, can be so annoying and feels like walking on sponge, as it travels up the body. Very "Tigger like"!
 
Yes clonus is an UMN symptom so can be associated with both PLS and ALS but doesn't necessarily point to ALS in particular. I have clonus in both ankles and I'm pretty sure in my wrists too.

On a side note regarding the PLS vs ALS controversy: I just had my 2nd appointment at NIH last month (PLS Study) and my Dr. there said that the idea that all PLS eventually turns into ALS was the thinking back in the 80's or so and there are now a core group of researchers who make the distinction between the two.
 
Al, I went to Youtube to check out the video but pulled up dozens of them. I'm confused about clonus and if what I'm experiencing falls under that heading. Does clonus only occur from a physical trigger (ie reflex strike)? When my doc checks my reflexes I violently kick but have very little repetitive bounce. What does happen is that when I'm tired or overly anxious I can have what I can only describe as tremors of either my arm or leg. Is that clonus or something else? I've tried to do my own research but am overwhelmed with the amount of varying rabbit holes that I end up heading down.
 
Bulldog, with PLS muscles that are over exerted will quiver, tremble, shake or other descriptive vocabulary. As the muscles continue to get a weaker signal... what's still there in mass will tremble, shake, whatever just going down a flight of stairs or trying to carry something with your arms/legs in proportion to what degree of muscle loss you have. Not atrophy (big difference). As PLS progresses it's really important not to give into it, as my Neuro told me with a little different twist of the common "Use it or lose it" phrase. His is, "Use it or lose it... sooner. But... don't over do it." Some may disagree but... work out exercise will not strengthen the failing signal from the Primary Motor Cortex. My saying is... "Use it but save it too."


Early clonus needs some form of significant trigger. Later, more so with ALS, a cool breeze on the face can trigger it. I'd say, my opinion, if you can still get around with a cane, climb stairs, descend stairs, get in and out of chair without having to scootch out to the end of it and struggle to get up right... it would take a wack on one of the reflex points to present clonus. But... the lack of brisk reflex doesn't rule out PLS either.

(Here's one for conversation... a lack of reflexes can also present itself in PLS and ALS. So, a brisk reflex is not a single indicator of PLS. That "brisk reflex" thing is not a chiseled in stone. Like the Babinski test... most people the toes come up and spread and with some folks the foot just doesn't move.) With the Hoffman test not every flick on the end of your "show 'em what you think" finger :) will cause your thumb to flex in.

Here goes... for the most part Charlie Horses are muscles, cramps are tendons, fasciculation ("twitches") are muscle, clonus is tendons but some over the counter ointments say they relieve muscle cramps. ?? Is a tendon a muscle? :)

I guess it's why Neurologists get paid the big bucks. I sure ain't one either so talk with your Neuro. :)
 
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Not sure I'm following the last part; it's my understanding that muscle cramps, spasms and Charlie horses are all the same thing and are muscular. Fasciculation's are involuntary muscle twitches as is clonus. Fibrillations are involuntary muscle movements caused by loss of connectivity to the nerves (MND) and are detected by the EMG. Am I incorrect?
 
I have clonus in my face--lips especially--one of the reasons I gave in to disability retirement--my lower face shook when I was talking and I was embarrassed to speak in my classroom. Eating, drinking from a straw--prefer to do it in private. I hate myself...
 
I have clonus in my face--lips especially--one of the reasons I gave in to disability retirement--my lower face shook when I was talking and I was embarrassed to speak in my classroom. Eating, drinking from a straw--prefer to do it in private. I hate myself...

Don't hate the playa, hate the game!!!!!!!!!!!!!!!!!!!!!!

I have body wide clonus: ankles, legs, arms, and even in in my head. I hate ALS.
 
Haha--if you CAN walk away after you pee on it.....
 
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