Trapezius Twitching

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New member
Nov 29, 2022
Learn about ALS
East Coast
Hi everyone. Firstly, I want to let everyone know that I have read the “please read first” pinned threads.

I have had widespread fasciculations for approximately 7 months now. Because I have had no motor function loss, they haven’t really worried me. That is, until recently. What I have noticed lately is persistent fasciculations of the upper trapezius muscles. They have become so troubling that I began to search them and found numerous studies relating twitching in this muscle group as an early indication of ALS (see below). I’m thinking it may be time for an EMG.

I know people are apt to say that fasciculations are not an early sign of ALS but I have often found informations in studies that seem to contradict this. If one relies on studies alone, such conclusions are not so cut and dry.

Clinical utility of trapezius muscle studies in the evaluation of amyotrophic lateral sclerosis

Needle electromyography (EMG) and determining the motor evoked potential (MEP) of the genioglossus (tongue) are difficult to perform in evaluation of the craniobulbar region in patients with amyotrophic lateral sclerosis (ALS). Needle EMG and MEP determination in the upper trapezius were carried out in 17 consecutive ALS patients. The needle EMG parameters recorded included abnormal spontaneous activity and motor unit action potential morphology. An upper motor neuron lesion was presumed when either response to cortical stimulation was absent, or the central conduction time was delayed (>mean + 2 SD). Of the 12 patients with limb-onset ALS, using needle EMG, 11 were found to have abnormalities in the upper trapezius, and only five in the tongue. Three of the six patients with isolated limb involvement had abnormal MEP findings. In conclusion, electrophysiological studies of the upper trapezius are useful in ALS patients without bulbar symptoms. Clinical utility of trapezius muscle studies in the evaluation of amyotrophic lateral sclerosis - PubMed

Utility of trapezius EMG for diagnosis of amyotrophic lateral sclerosis

Needle electromyography (EMG) of the tongue is traditionally used as a key to the diagnosis of amyotrophic lateral sclerosis (ALS), although relaxation of the tongue is often difficult to achieve. Recently, frequent abnormalities in the EMGs of the sternocleidomastoid (SCM) and upper trapezius muscles in ALS have been reported. To elucidate the diagnostic utility of these muscles we performed a multicenter prospective study to examine EMGs of the tongue (genioglossus), SCM, and trapezius in 104 ALS or suspected ALS patients. We also examined EMGs of the SCM and trapezius in 32 cervical spondylosis (CS) patients. We mainly evaluated fibrillation potentials/positive sharp waves (Fib/PSWs) and fasciculation potentials. Complete relaxation was achieved in 85% of ALS patients in the trapezius, but in only 6% of patients in the tongue. Fib/PSWs were observed in 8%, 13%, and 45% of ALS patients in the tongue, SCM, and trapezius, respectively, whereas fasciculation potentials were observed in 1%, 7%, and 39%, respectively. Abnormal spontaneous activity of any type was found in 9%, 17%, and 63% of patients, respectively. The high frequency of abnormal spontaneous activity in the trapezius was similar among the different diagnostic categories, and even 72% of clinically suspected ALS (progressive muscular atrophy) patients showed them in their trapezius. We did not observe Fib/PSWs or fasciculation potentials in any of our CS patients, thus these findings have excellent specificity. Tongue EMG added little utility over the clinical sign of tongue atrophy. Abnormal spontaneous activity in the trapezius would be more useful for the early diagnosis of ALS. Utility of trapezius EMG for diagnosis of amyotrophic lateral sclerosis - PubMed
Neither of the studies say anything about the people being studied having only twitching. They had suspected ALS or ALS and abnormal emgs. No surprise here. Twitches / fasciculations that you see and or feel are not the same as fasciculation potentials of emg. Even simple fasciculations on emg are not what they studies and criteria are speaking about. There is a particular complex fasciculation waveform that they look at. I believe the point of these papers is that the upper trapezius may be a more convenient site to check for bulbar issues

if you are worried go see a doctor but reading studies you apparently don’t understand is not helping you
Thank you very much for your response, Nikki J.

I also have sternocleidomastoid fasciculations, for what it is worth. If these are indeed benign fasciculations, then these areas— upper trapezius and sternocleidomastoid— are my “hot spots.”

I’m currently trying to make an appointment with a neurologist to have an EMG but having trouble finding one that will accept a patient without insurance. God help you if you can’t afford insurance in this country.
I suggest you look into aca plans. Even if for some reason you don’t qualify for a subsidy you could sign up for January tell the doctor‘s office you will have x plan in January and get an appointment for then. You can cancel aca plans during the year. I think going without insurance is very dangerous but the premium for a couple of months is probably less than a neuro and tests even with deductible as with insurance you get a discounted rate if you are very poor you can get medicaidif you live in a state with expansion
The post you read first should make it clear we write that so we don't have to argue against internet searches. You will find all the contradictions you like on the internet, but we just don't have the energy to check and debate each one.
Twitching without weakness means nothing.
I hope you get some answers from doctors, you won't get them from the internet.
Thank you for the responses.

Fasciculations in the context of ALS are related to the progressive, irrevocable destruction of muscle, correct? As such, they would be a secondary symptom rather than a primary symptom. If this is the case, it would necessarily follow that once twitching commences in a particular area (for reasons related to muscle destruction), it would be constant and permanent.

So why have some with diagnosed ALS (on this site) speak of their fasciculations as variable and intermittent— i.e., coming and going and alternating in intensity?

Also, the site lists symptoms as “weakness OR twitching in the muscles” (emphasis mine), rather than weakness AND twitching. If this is inaccurate, then this is the kind of imprecise language that drives confusion.
As Tillie says we are not here to argue. I suspect you took part of a sentence and that altered the meaning. A quick persusal of that site showed me one section where they listed multiple possible early symptoms and another section where they spoke of weakness as being seen in limb onset.

muscles twitch in ALS when their controlling motor neurons are actively dying. They don’t twitch when they are dead since motor neurons don’t all die together twitching from it can come and go.

please until you have a doctor’s diagnosis no more posting. We are not going to keep refuting things you think you read
Ok, will do.

I would have posted my concerns at the aboutBFS forum but it doesn’t appear to be functional anymore, at least in terms of allowing new user registration. There are also no recent threads.

It’s unfortunate because it might have lightened the load in this sub-forum, which I assume would be welcomed.
If you had read the read before posting sticky you would have seen we note that aboutbfs is read only and recommend bfs recovery on fb and or muscle twitch on reddit
Try reading our sticky post again more carefully and then feel free to discuss your concerns through the links there.
We can only ask people to read that sticky, if they choose to just glance through it then post here, we can't do much more than reference the sticky yet again.
All the best.
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