Fasciculations - Persistent or Intermittent

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HPXB

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I want to be respectful and keep my post fairly brief.

I am a male in his mid 30's. For the past 10 months, I have been experiencing visible fasciculations, beginning in my left hand/thumb and eventually spreading throughout my body. At this point, I have recurring fasciculations in my hands, biceps, buttocks, pectorals, mid-back, calves, quads, face, and feet. They are not constant, in that they do not occur 100% of the time, but they do occur frequently throughout every day. While my strength feels off here and there, I have not noticed any obvious weakness and have not experienced clinical failure.

My question is: Are the fasciculations associated with ALS typically persistent (i.e., they never stop, even for a moment) or can they be intermittent (i.e., occurring every few minutes)? From the patient's perspective (i.e., without an EMG), are there any other ways to distinguish benign fasciculations from those indicative of ALS?

Thank you so much for allowing me to post in this forum and for any guidance you are able to provide. I tremendously appreciate it.
 

lgelb

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The best advice to see a physician who can baseline your strength and assess you for any issues of concern. As you will have read, fasciculations in themselves are not signs of ALS. The diagnosis is made through medical history, clinical exam, and testing. Each is about much more than fascics.

We cannot generalize the question you are asking. I will say that the medical literature doesn't show any cases of 24/7 fasciculations -- it is hard to see that as a survivable condition.

There is no need for an EMG from what you have said, if a medical exam reveals no cause for concern. So this comes back to...see a doctor.

Best,
Laurie
 

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ALS is about failure of muscles. You are concentrating on twitching which means nothing on its own.
Did you read this post?
 

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As a pALS with constant fasciculations I agree completely with the responses from Laurie and Tillie. Work with your doctor, but certainly don’t jump to ALS with that as your only symptom, especially at your age. Benign Fasciculation Syndrome (BFS) is in my view much more common than reported.

It is important to realize many pALS experience very few if any twitches, which is why many other symptoms found only on a clinical exam and other tests done by an experienced neurologist are necessary to even begin to consider motor neuron disease. And don’t jump right to seeing a neurologist until you have been seen by your Primary Care Physician.

There have been several research efforts to distinguish between benign and ALS fasciculations, and the conclusions are really inconsistent at best. Some research attempts to distinguish location, occurrence rate, differences on an EMG, etc., while other literature seems to say that it is not really possible to make that distinction. For example, one paper I read indicated that eyelid twitching is not usually found in ALS patients, but I have those as well.

There is also sometimes a semantic confusion about the 24/7 expression you may have read in posts here or elsewhere. I and other pALS that have constant fasciculations will often say we have them 24/7, but that does not mean every muscle is twitching every moment of every day. Laurie is spot on in that the metabolic energy used in such a case would probably not be survivable for long. Yes, they are persistent in that they occur every day, but not every second of every day.

While I have several dozen twitches per minute if not more, they are usually In different muscles. More like popcorn popping at different locations. From that perspective, “persistent” and “intermittent“ can both occur, and many, many people, especially males of your age group, develop persistent fasciculations that are totally benign. I know it can be difficult, but try not to worry. One of my best friends‘ son developed BFS at about your age, and that was more than a decade ago. My own neurologist has had fasciculations in his leg for years. Best, Kevin
 

HPXB

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Hi All,

I just wanted to genuinely thank each of you for your kind and thoughtful responses. They have been tremendously helpful. The semantic clarification regarding "persistent" and "intermittent" was particularly enlightening. I also am struck by how warm, patient, and reassuring this support network is, both to me and to others I see posting in the forum. It is for this reason, as well as my recently gained awareness of the dearth of ALS treatment options and conclusive research, that my wife and I committed months ago to a recurring donation to the ALS Association. Regardless of the outcome of my personal diagnostic journey, I intend to maintain this recurring donation and to participate in subsequent fundraising efforts.

While the description of popcorn popping is admittedly something I deeply relate to, in that I have used those exact words to describe my own fasciculations, I am holding onto hope that it would be unlikely for ALS to initially present as fasciculations throughout the body (i.e., diffuse and bilateral) without obvious weakness/failure instead of either fasciculations + weakness/failure together or fasciculations that start in one defined body area (e.g., Left hand/bicep) and spread from there. Mine were first noted in the left thumb, but "spread" rapidly to the many other body areas noted in my first comment. It is possible that this was not a spread, but rather my own growing awareness of what my body was already doing. That said, I do recognize that this likely is a very difficult comment to respond to, as the literature is unclear, you have not medically examined me, and there are simply too many exceptions and variables at play when it comes to ALS. I just wanted to communicate some of my thought process.

Importantly, I certainly will heed the wisdom of this group and 1) follow up with my provider and 2) avoid unhelpful/excessive worrying.

Thank you again for all of your help!

H
 

HPXB

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Hi All,

I do have a quick follow-up question, as a recent visit to my primary care doc led her to request that my neurologist appointment be bumped up. Specifically, she noted brisk reflexes (3+) in my legs and hyporeflexia in my upper body (noted my back, arms, and neck were extremely tense, which has been true for at least a year, as other providers have noted it in the past without testing reflexes). She ran some bloodwork and all that has come back so far is the Sedimentation Rate, which was within normal limits (i.e., 1mm per hour). Previous blood work (run 8 months ago or so) was fine. I have reached out to my neurologist to try and bump up the appointment, as requested. Is this picture and the full body fasciculations concerning for ALS? Thank you very much for your time!
 

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Nope, still not, please whenever you get worried again, go re-read the post I linked you to at the beginning of this. It will really help you keep perspective.
Neurologists work with literally hundreds and hundreds of diseases and syndromes, being referred to one by a GP does not indicate ALS in the least.
Let your doctors do their jobs and work on living and staying in the best shape possible in the meantime. All the very best.
 

KevinM

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Wishing you the best with your upcoming neuro appointment. Please report back once you have been examined.
 

HPXB

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Hi All,

Thank you again for your ongoing support! As requested, I wanted to provide an update following my neurology appointment and EMG (today). Skipping right to the meat of it, I obviously feel very lucky to report that the EMG (R-side hand, arm, and leg) was clean. Given that my fasciculations were first noticed approximately 11 to 12 months ago, the neurologist emphasized that he felt ALS would be extremely unlikely (i.e., "could be put to bed"), highlighting that he would expect to see EMG evidence of denervation bilaterally at that point. While he did not put a ton of weight on this next point, he did note that he felt it was also a good sign that the fasciculations, though present, could not be "mechanically induced" via manipulation/impact. This is true, as I have never been able to cause them by smacking/jiggling an effected area. He had an explanation for this involving sodium/potassium channels (I think?) that I did not fully follow, but he graduated from Harvard...I believe him.

His current thought is that, despite bloodwork coming back generally clean, my symptoms are likely indicative of an autoimmune issue, given that my family has a VERY lengthy history of autoimmune disorders (e.g., sister, mother, cousins, aunts, uncles, grandparents). Both he and I also observed that I noticed my symptoms within a month or so of receiving the first dose of the COVID vaccine, which he posited might have been the catalyst of this response, similar to the way that something like Mono can kick of autoimmune issues. I have more tests in my future, I'm sure, but ALS seems to be unlikely at this point.

Thank you again for all of your kindness, wisdom, and support. I will be continuing monthly donations to the ALS foundation indefinitely and will be launching a charitable fundraising effort in my area in the next month. Take care and thank you again.

H
 
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