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Clearwater AL

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I’ve been reading a lot of Threads and posts concerning Primary Lateral Sclerosis.
And… this sub-Forum has been relatively quiet. Not to cause a stir but maybe create some discussion.

If you have a confirmed or possible diagnosis of PLS and you are having fasciculation they are real but… fasciculation is not related to Primary Lateral Sclerosis.

In PLS if an EMG that shows no evidence of chronic denervation which is the true trigger (cause) of fasciculation in an honest (confirmed) diagnosis of ALS

If you have a diagnosis of PLS (or possible) and you talk to your Neurologist about fasciculation you will get, 99% of the time, get a vague answer. It would be extremely rare for a Neurologist to tell you your fasciculations are physically part of PLS.

Ok, Karen and others… your opinions.
 

ShiftKicker

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Al, my last appt with my neurologist this came up again. She observed faciculations in a few different places and clearly stated that people with PLS can get them. She was looking right at them happening while I was in the clinic, identified them out loud and pointed them out to her resident to show him what they looked like. Her response when I brought up the commonly understood ALS- yes, PLS-no, was that the people who write the textbooks do not have access to actual patients. I believe her.
 

KimT

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I have brisk reflexes everywhere except my left ankle. I have no reflex on left ankle.

Fasciculations are a lower motor neuron symptom. But there are so many benign causes, I've spoken to people with PLS that have them and have not developed atrophy and have clean EMGs.

Neuroexam.com - Motor Exam
 

KarenNWendyn

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Al,

I’m flattered that you would ask my opinion, but I’m no expert when it comes to PLS.

I’ve come to the conclusion that fasciculations in general are really not that important a symptom one way or the other, except in BFS. I read somewhere that up to 70% of people experience fasciculations during their lifetime. That’s a lot of twitching!

I have lower motor neuron-dominant ALS with plenty of weakness and atrophy. My fasciculations have never been all that prominent. Go figure.
 

Gorby

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I'll put in my 2 cents...

I do get fasiculations. They started at the same time as my PLS symptoms. Could be a coincidence, stress, medication, etc.? To me, it seems unlikely that after 47 years of life, both PLS and fasics would appear at the same time if they are unrelated. Now, after 7 years of PLS symptoms, I still get fasics.

Fasics have lots of causes, not just denervation. So my theory is that fasics in PLS do not have the same mechanism as they do in ALS. ALS makes intuitive sense - motor neurons die, muscles atrophy, and you get paralysis. With PLS, our upper motor neurons die and we end up with spasticity? Go figure. My understanding is that the spasticity arises from noisy signals reaching the muscles. Maybe my fasics are also from noisy signals? Maybe they are from overworked (spastic) muscles?
 

Clearwater AL

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Thanks for the replies. Adding to the discussion. I have gone from brisk reflexes years ago to minimal (almost absent) reflexes now.
 

billbell52

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I was diagnosed with PLS by an MDA/ALS clinic. I had never heard of PLS and found out it was extremely rare. I have fasciculations and thought for sure they misdiagnosed me. I was reassured it was PLS and the fasciculations are benign.
 

LookingAround

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I am diagnosed with bulbar onset PLS with symptoms beginning in 2004. I just went back for a "while we are both still alive" re-evaluation with Dr. Stanley Appel at Houston Methodist. My EMG (14 years out) remains free of any lower motor neuron damage. I asked about fasciculations since I have had them in both upper and lower body for the entire length of symptoms. I asked Dr. Appel specifically about fasciculations and PLS. He said that they DO exist in true PLSers and while no one knows why exactly--here we are.
 

ShiftKicker

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Oh dearie me "While we are both still alive." Thanks for the slightly morbid chuckle. I've heard similar from one of his other patients. He sounds like an excellent doctor who connects well with his patients.
 

Trippy

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yep, the PLS expert at NIH said they do exist with PLS. I had them much worse at the beginning while spasticity was spreading but they calmed down quite a bit in the past couple of years. I'm still hyper reflexive just about everywhere, startle easily, and have significant spasticity that is untreated except for cbd oil and vaporizing. I can still move everything, just not in a coordinated way. One doctor clarified it for me..paresis not palegia.
 

Livealot

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Looking Around , you have made me very hopeful about my husband's DX .Thanks for sharing your history.My husband was DX in August ,after 2 years of seeing DR's. With progressive bulbar palsy .He can't talk and has a feeding tube.The thing is his limbs are fine.He drives,mows the grass , and washes the cars.Maybe he will be lucky too.I apologize if I hijacked the thread .
 

Clearwater AL

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Fasciculation in ALS actually has a real mechanism to cause them. It's from damage to the Lower Motor Neuron. PLS is defined with the absence of damage to the Lower Motor Neuron.
PLS is.... Upper Motor Neuron only.

Yes, those diagnosed with PLS have fasciculation... they're real.

Doctors say they don't know why because... it's not related to ALS.

IF PLS is going to morph onto ALS an EMG will pick it up.

And, muscle loss from inactivity due to weakness is entirely different than atrophy. The early stage of true atrophy goes back to fasciculation and why.

Maybe for further discussion (or disagreement)... :)

Fasciculation may show up on an EMG. But, if two other things, and maybe a third, are absent... the EMG will be negative to ALS.

Just saying.... I am not as verbally articulate as I used to be. Memory issues.
 
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