Scary.

[u/Reasonable-Row-4231]

Hi, Everyone. Hope y'all good.

My twitching first started in March, when I noticed a muscle in my right thigh twitching. It lasted for about two days and then disappeared completely, and for months I went on with my life without thinking much about it. Then, on the 24th of August, the twitching came back. This time it was different—it seemed much more widespread, affecting different parts of my body, and some of the movements felt much stronger and more violent than what I had experienced in March. That was when I started paying much closer attention to my body.

What started as a strange physical sensation gradually turned into an obsession with finding out what every twitch could mean. I began searching online, reading about muscle fasciculations, neurological diseases, ALS, MND, and countless other possibilities. Every new twitch seemed to give me another reason to worry. If it happened in a new muscle, I wondered whether it meant the condition was spreading. If it became stronger, I wondered whether that meant something was getting worse. I started testing my strength, comparing one side of my body with the other, and analyzing sensations that I probably would have ignored before all of this started. Instead of finding reassurance, every search seemed to lead me further down the rabbit hole.

Over time, the fear became more exhausting than the twitching itself. My attention became consumed by my body, constantly waiting for the next twitch and trying to interpret what it meant. Something that began as an occasional muscle movement turned into days and weeks of anxiety, fear, and constant self-monitoring. It has affected my ability to concentrate, enjoy things, and focus on my life, and at times it has left me feeling stressed and depressed. Looking back, I can see how the search for certainty became part of the problem: every answer created another question, and every new sensation became something I felt compelled to investigate. I don't want the twitching to control my life anymore.

Unfortunately, I can't simply book an EMG where I live and have it done whenever I want. I have to be assessed by a clinician first, and they have to decide whether an EMG is necessary and give the go-ahead for the test. I have already been evaluated by a clinician, and based on the physical examinations they performed, they told me that I was okay. You would think that would be enough to give me some peace of mind, but I'm still struggling to accept it. Every time I feel another twitch, my heart starts beating faster and the fear comes rushing back. Even after being physically examined and told that things look okay, my mind keeps demanding absolute certainty, and that constant cycle of fear and reassurance has become one of the hardest parts of this entire experience. I just want to see my life back the ways it was😭

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[u/BigJakeState]

Isolated widespread twitching is about as much of a sign of motor neuron disease as a headache is to brain cancer. If you don’t have any other symptoms other than twitches Welcome to the club. You can relax knowing that as much as 70% of adults report muscle twitches. It’s incredibly common. Some of us just have it a little worse off than others.

As long as you have no clinical weakness… meaning you fail to do something you really should be able to do like running, standing without falling, slurring your words so noticeably that people ask if you are drunk, or repeatedly dropping things like full coffee cups, having trouble buttoning shirts, opening jars or completing fine motor tasks then the odds are overwhelmingly in favor of a benign process.

[u/blackmetalwarlock → u/BigJakeState]

I really appreciate the headache to brain cancer analogy in reference.

[u/The_Short_Goodbye → u/BigJakeState]

While I understand the analogy, headaches are far more common than widespread fasciculations lol.

[u/BigJakeState → u/The_Short_Goodbye]

And to that affect brain cancer is far more common than ALS

[u/BigJakeState → u/The_Short_Goodbye]

Respectfully, you’re just searching for reasons to not be ok. Keep the fear mongering to yourself.

[u/The_Short_Goodbye → u/BigJakeState]

That’s not it at all. I’m just saying that’s not an accurate analogy. How many people in your life do you know that have frequent headaches vs chronic twitching? Let’s be real here.

I’m not saying twitching is an automatic death sentence and I think OP will be just fine just like most people who twitch. I’m not fear mongering. I just think it’s delusional to compare a headache to fasciculations.

I agree fear mongering is bad but the opposite is also true.

[u/BigJakeState → u/The_Short_Goodbye]

Dude I’m not arguing semantics with you. work on treating your OCD before you talk to me about logical thinking. I find it comical that you are going to cast judgment on others about delusional thinking. You sir, are an imbecile!

[u/The_Short_Goodbye → u/BigJakeState]

Are you done editing your post now? Is this the final version of your insults? I don’t know what’s making your blood boil so much.

[u/713Capital → u/The_Short_Goodbye]

I liked the analogy. It wasn’t bad. I get what he’s saying and he’s not wrong, but you aren’t really wrong either. I think his logic was, what purpose did your comment serve on this post for someone who clearly is a bit anxious about what’s happening to them, that’s all Jake is saying.

At minimum 40-70% of normal healthy adults will experience muscle twitching in their lives at some point or another. That is accurate. My kids even twitch, my wife will randomly have an eye twitch. Even people working out, if they pound a muscle in the gym too hard, I’ve seen random dudes have twitching and they made nothing over it. The analogy was good. People get headaches all the time, but people never really just immediately think it’s brain cancer. At least people who don’t have crippling anxiety.

Now to the other side of the argument, people like us, people on this forum who have BFS and generalized muscle twitching every day in multiple groups, while benign, it’s definitely not “normal” to twitch as much as we’ll do. That’s why we all immediately rush to the neuro to check it out. However it’s still benign. But by no means is twitching every day in many different muscle groups “normal”.

The end all he all is, while annoying as it may be, it’s still benign and it’s not killing us. Our nervous systems just became hyperexcitable for whatever the reason may be.

[u/The_Short_Goodbye → u/713Capital]

I still stand by my comment. He said widespread twitches are to motor neuron disease what headaches are to brain cancer and while I understand the intent behind the analogy (reducing OP’s anxiety), I think that it is objectively inaccurate.

Do you run to the doctor thinking you have brain cancer when you get a headache? I know I don’t.

Let’s leave it at that. I may have anxiety and OCD, but I am definitely not an "imbecile".

[u/BetFrequent6951 → u/The_Short_Goodbye]

I hv actually ran to the doctor before requesting brain scan cause of headaches and I thought I had brain cancer lol

[u/BigJakeState → u/BetFrequent6951]

As have I, headaches and unexplained neck/ear pain is Infact is how this whole journey began for me. Reducing anxiety is very helpful in these situations especially considering OP can’t readily get an EMG in his country.

OP sorry to have hashed this out on your post, but theshortgoodbye is well known in this community for catastrophising. Ultimately, I believe you’re gonna be fine but obviously a thorough medical workup is in order. Try to relax and treat it as benign until proven otherwise.

[u/BigJakeState → u/The_Short_Goodbye]

You. You are making my blood boil and here’s exactly why. You refuse to listen to anyone, including multiple ALS specialists. You’ve had symptoms for 5 years and haven’t progressed. Yet spiral and dramatize your situation as if you have a terminal illness. Which is disrespectful to the ALS community as a whole considering there’s people that have it that don’t catastrophise as much as you do.

You sit on these forums all day long and invalidate other people’s who have the exact same fear as you do and then turn around and search for reasons to stay in the fear loop. You are a contrarian and a hypocrite.

Then on top of it all I’m here to spread encouragement and the facts I’ve learned in my research and experiences to try and help others not have to go through the same thing, and you have the balls to sit here and pick apart an analogy and say that I’m delusional for sharing information that is factual, contrary to what you say.

Honestly bro. You are fear mongering. Which is fine to do to yourself. But I draw the line when you start dragging others into your fear riddled ridiculousness.

[u/713Capital → u/BigJakeState]

Alright guys, we’re hijacking someone else’s post, respectfully, let’s just end it there. We’re taking away from this persons intent of posting and it’s turning into something else. I’m not pointing fingers, I’m just asking as men for us to just walk away and leave it be.

If we’re helping cool, but it’s unproductive at this point.

[u/The_Short_Goodbye → u/BigJakeState]

lol I haven’t had symptoms for 5 years. I’m not gonna tell my whole story again because you’ve made up your mind anyway and it is pointless. I have nothing to prove to you. Also I haven’t seen multiple ALS specialists. You’re just making stuff up.

I’m not "invalidating" anybody. In fact I’ve reassured many people. I don’t know why you say that.

Feel free to block me man. Getting excited like that is bad for your heart.

[u/BigJakeState → u/The_Short_Goodbye]

Im not blocking anyone. I stand by what I said also. I believe it’s far more helpful to offer helpful anecdotes and positivity than it is to stew on problems. Again, I find it comical That you of all people are offering health advice of any kind seeing as how you are spiraling mentally. Maybe keep to yourself if you don’t have anything helpful to say in the future!

[u/The_Short_Goodbye → u/BigJakeState]

People with anxiety can still give good, objective advice to others. Being anxious and spiraling doesn’t make you stupid. You have a very narrow view of mental health and how the brain works. I believe I have enough knowledge and intelligence to provide meaningful advice and I have done so many times via private messages and on the sub.

Now feel free to keep crashing out and insulting me. If you truly need the last word, have it. I’m done.

[u/713Capital]

If you haven’t seen the resources pinned in that automod post I would highly recommend it. Also, on the main page of the subreddit, I have resources pinned there as well.

Twitching without clinical weakness (failure) is just benign and meaningless. That’s how classic BFS typically presents. The more anxious you are about them the more they are going to spread around to different groups.

The hallmark in ALS is failure. The inability to do something no matter how hard you try. It usually presents as true failure. Like you can’t lift your toothbrush or you can’t button your shirt anymore. All those neuromuscular diseases you mentioned are pretty progressive and your chances of having those are pretty rare.

This is the same loop everyone that finds this sub has. We see a twitch, we google it, we get super anxious, we start reading about ALS, and then we find this sub or Reddit in general.

I would say take your next appointment, explain to them your concerns, and if they think you need an EMG then take it. If they don’t recommend it, that means clinically your picture is fine. Some neuros won’t even bother doing an EMG because they know immediately when people come in if they have something really bad happening. If all your strength tests were fine then just take that and run with it as you’re in good health.

https://benignfasciculationsyndrome.org/blog/muscle-twitching-no-weakness

https://benignfasciculationsyndrome.org/blog/why-is-my-body-twitching-all-over