Seeking advice after 2.5 Years

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SeekingGuidance

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May 16, 2021
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Learn about ALS
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Country
CA
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Woodstock
I have been daily twitching body wide for nearly 2.5 years now, with “hot spots” in my lower extremities (calves/feet) that are constant and have been constant the entire time. I am a male in my early 40’s who is otherwise healthy and on no medications.

My doctors have not been able to diagnose any direct cause for the twitching. I had an EMG a long time back that did not find anything related to ALS.

I fear that because my twitching has remained constant for this long of a period, despite every imaginable lifestyle change in hopes of rectifying it, that I am stuck with a very slow progressing case of ALS.

I have read statements online that it takes up to 5 years to dismiss twitching as being completely benign in nature.

Do I need to move on and accept this as just a new normal in life? Or do I continue to wait and see if this progresses?
 
Hi - twitching means nothing without clinical weakness which you don't have, let alone a clean EMG.
Please refer to the link below, and yes, you need to move on. Millions of people twitch without anything being wrong I'm very happy to say.
 
Thank you for your reply. I am aware that millions of people twitch, but I do not believe that millions of people twitch throughout their body, including their tongue, for 2.5 years straight without a single day of relief. That isn’t normal, and it isn’t common. I’ve spoken with many many people and no one I have met has ever encountered twitching on this scale. Yes, an eyelid twitch from time to time, but not incessant and never ending twitching.
 
Roughly five years are needed in verified upper motor neuron dysfunction, to differentiate PLS from ALS. That's the only five-year wait I know of in this realm.

OK, I found a paper saying in rare cases (i.e. four cases in their series, each with both cramps and fascics) it can take 4-5 years to manifest. You must be referring to that. These "exception to the rule" cases can freak you out about anything. You might be stuck by lightning while mowing your lawn. It could happen. It has happened. So someone could write that you should make sure the sun is shining for days on end before mowing your lawn. Would it be wrong not to?

I grant you that nonstop twitching for 2.5y despite lifestyle changes is unusual, but there are many anomalies in a species as diverse as ours that do not equate to ALS. If your twitching hasn't converted to functional deficits over 2.5y, there's even less reason (meaning 0; I'll stand by that since the rare cases reported as progressing to ALS had both cramps and fascics) to suspect ALS. If you haven't, I would explore some kind of counterstimulation as a possible treatment (by a qualified PT or physiatrist) and/or malabsorption syndromes where you would basically be malnourished, perhaps consulting with a dietician or nutritionally-oriented internist.

Best,
Laurie
 
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Individuals with ALS do not twitch all over their body for years without having the hallmark sign of ALS, which is function failure, which you don't have. Your response to the kind forum member who answered you is laced with combativeness; that's unfortunate given that they were kind enough to respond to you and provide exactly what you were looking for- an answer. I'm sorry you don't believe it, but in my opinion, as well, your symptoms are not ALS.

Keep hydrated, reduce caffeine, reduce alcohol (if you drink), and stretch. Also, keep working with your doc.

Best of luck to you and take good care
 
I can only agree with the above - while millions might not twitch as much as you report, people with ALS don't twitch for 2.5 years and yet have no failure. So whatever is causing your twitching, it sure ain't ALS.
 
I do not see anything combative about your follow up questions, which I see as legitimate.

My suggestion would be to arrange for a new EMG and clinical exam with a neuromuscular specialist that regularly treats and diagnoses motor neuron diseases. Fasciculations are more commonly associated with lower motor neurons, so an EMG testing several muscle groups would show abnormalities.
 
It's estimated that fascics are experienced by 70% of the population. Stating that they are associated with lower motor neurons might make someone anxious think that fascics, generally benign, are always associated with some kind of disease. That is far from the case.
 
You’re right. It was poorly worded. I was awkwardly trying to make the point that having a new EMG done by an experienced specialist is, in my opinion, the only way to alleviate the gentleman’s anxiety about possible MND. IF there was anything scary going on—which I very strongly doubt—the EMG would identify it because of the nature of his symptoms.

I do think it is a bit misleading to cite the 70% number without context. It is factually accurate, but it is not true that 70% of the population experience 24/7 full body fasciculations.
 
Well, to be realistic, no human metabolism could handle literally 24/7 full body fascics...and the person would die for lack of sleep.

But to fine-tune the point, there are no recorded cases of fascics alone turning into ALS after 2.5y.

We generally try to help the worried well see when they do not need that kind of exploration because those resources are scarce. We will never discourage all the unnecessary diagnostics, but we can try.
 
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Okay. Your points have been made.

Good luck, young man. I hope you find the cause of your fasciculations.
 
Thank you all for your replies. Indeed, I was not intending to be combative at all. I merely wanted to point out that my situation is demonstrably different than someone with the occasional eye twitch for an afternoon or even a few days.

I chose not to post here for a very long time because I thought I would be dismissed. Yet there are individuals on this forum who have themselves been told “there’s no way this is anything like ALS,” only to get diagnosed months later and return to be welcomed on the forum as a PALS.

I guess what I am going to do at this point is attempt to accept this as my new normal. I don’t really have the financial resources to repeat expensive tests when I have no hard evidence that my situation has changed since my last tests. I do not want, nor do I seek out, having this terrible disease. Maybe posting was a mistake.

I went over a year without giving much thought to ALS, but the continuation of my symptoms sometimes brings the thought back to mind, since we have discovered nothing to explain it.
 
I'm sorry you are going through this. I can imagine it must be incredibly frustrating. For me, when I give someone my opinion that their symptoms do not sound like ALS, it is based on multiple factors, not just a clean EMG. If someone has had years of only one issue, along with a clean EMG, clean clinical exams, and no function failure, it's a pretty strong indicator that they most likely have another issue.

ALS is so rare a disease that the folks here have much more intimate knowledge of the constellation of how it progresses, much more than someone who does not have the disease.

I do hope you find a resolution for whatever is going on with your body. Again, in my non-medical (but experienced) opinion, what you have going on really doesn't sound like ALS.

Best of luck to you. Please take good care.
 
I got thinking.... I have been diagnosed with Fragmented Sleep by a sleep study before I ever started the twitching. I wonder if this could be related.
 
Seeking, when you look up Fragmented Sleep you find several of these for one...

"Anxiety is frequently connected to sleeping problems. Excess worry and fear
make it harder to fall asleep and stay asleep through the night. Sleep deprivation
can worsen anxiety."

Have you had any counseling/treatment for Health Anxiety?

Don't know where this came from...

"Yet there are individuals on this forum who have themselves been told “there’s no
way this is anything like ALS,” only to get diagnosed months later and return to be
welcomed on the forum as a PALS."

I still have a very good memory... maybe you could tag just the Thread dates of
what you found - read from old postings.
 
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