2.5 Years of Muscle Twitching and Fear of A** – What I Would Tell My Former Self Today
I am writing this post because, more than two and a half years ago, I would probably have been looking for exactly this kind of personal account. Please don’t be surprised if the writing sounds a little too polished at times. I’m not a native English speaker and used AI to translate the text. Although I now know that, when you suffer from health anxiety, it is often better not to spend hours browsing forums like this, reading positive experiences from other people may still help as a first step.
I cannot diagnose anyone or offer medical reassurance. I simply want to share what symptoms such as muscle twitching and a subjective feeling of weakness—and the fear associated with them—did to me, and what gradually helped me escape this spiral.
How It All Began
For me, it started in March 2024—or at least that was when I first really noticed that something did not feel right. Initially, I experienced a slight feeling of weakness in my hand. Shortly afterwards, the sensation spread to my forearm and thighs. I noticed it more strongly on my right side than on my left.
At first, I thought it might be caused by a trapped nerve or my thyroid. I have Hashimoto’s thyroiditis, so I suspected there might be a connection. However, when I suddenly woke up one night short of breath and feeling as though I was having difficulty swallowing, I went straight to the emergency department.
I spent almost a week in the neurology ward. Numerous tests were performed, including blood tests, nerve conduction studies, SEP, MEP, EMG and an MRI. None of them revealed anything significant. I was discharged without a diagnosis and was told: “Come back if one of your limbs becomes paralysed.”
I was devastated. The symptoms were still there, but apparently no one could find a cause.
Over the following weeks, the feeling of weakness in my legs became even stronger. Walking for any significant distance or length of time felt almost impossible to me, even though I had always been physically active. Naturally, I began searching online for possible causes. I continued to suspect my thyroid because I was also constantly tired and losing weight.
When the Muscle Twitching Started
About three months later, muscle fasciculations began—and that was when everything became considerably worse. At first, the twitching occurred in exactly the same places where I had felt the weakness. It then spread throughout my body, although never in several places simultaneously.
The duration also varied. On rare occasions, a muscle would twitch in the same place for several hours. Most of the time, it lasted only a few seconds before appearing somewhere else. My tongue was an exception, as the fasciculations there sometimes lasted longer.
When I added “muscle fasciculations” to my search terms, I quickly came across A**, and my anxiety shot through the roof. It did not take long before I ended up in the emergency department again with a panic attack. Another EMG was performed, which once again showed nothing abnormal. I was discharged the same day—again without a diagnosis.
A whole carousel of additional symptoms now joined the subjective weakness and muscle twitching. I increasingly experienced pressure or a lump-like sensation in my throat, the feeling that I had excessive saliva in my mouth, alternating pain in tendons and muscles, and eye floaters.
This marked the beginning of an odyssey through different medical specialists: neurologists, rheumatologists, endocrinologists, orthopaedic specialists, radiologists, ophthalmologists and others. Yet nothing significant was found. I spent a fortune on doctors, blood tests and mineral analyses while constantly trying to find the answer myself.
The Anxiety Spiral
The good news was that, during the first year, there were repeated periods in which the symptoms improved. Although I felt the subjective weakness and muscle fasciculations almost every day, their intensity fluctuated.
Despite this, the fear of A** and of my symptoms getting worse was almost always my first thought when I woke up and my last thought before falling asleep.
I also started strength training again. Initially, it reassured me that I could still lift weights and even improve my performance slightly over time. However, that reassurance never lasted very long.
Quite the opposite: I became obsessed with constantly testing my strength and monitoring every tiny detail of my body. Naturally, I suddenly discovered areas I had probably never consciously looked at before. If, for example, my forearms looked different from a particular angle, my mind immediately jumped to possible muscle atrophy.
My wife supported me as well as she possibly could throughout this entire period, and I am incredibly grateful to her. Still, I repeatedly asked to squeeze her hand as hard as I could so that I could check whether I still had enough strength. I would also ask her to perform certain exercises that I had convinced myself I could no longer do as well—such as yoga poses that involved standing on one leg.
Every form of reassurance lasted only briefly. Then I would discover a new area, a new sensation or a new test.
The BFS Diagnosis
Within that first year, I consulted another neurologist who also had experience with rare neurological conditions. She took my concerns seriously and carried out a number of examinations. These included another EMG in several different muscles, which was normal apart from a single fasciculation.
She reassured me and diagnosed me with benign fasciculation syndrome, or BFS. She also showed me a publication that specifically mentioned that BFS can be accompanied by a subjective feeling of reduced performance or weakness, as well as other symptoms.
For the first time in almost a year, I was able to calm down a little.
Unfortunately, that feeling lasted for only about three months before the anxiety spiral was triggered again. A short time later, I returned to the same neurologist. By that point, I had already been examined by a total of seven neurologists.
She performed another EMG and tested me for various antibodies. Once again, nothing significant was found. I felt reassured again—this time for a little longer.
To be on the safe side, I also arranged an MRI of my brain, cervical spine and thoracic spine. Again, nothing was found that clearly explained my symptoms.
Therapy and an SSRI
By the middle of 2025, I was back at my neurologist’s office because of my fear of A**. This time, she raised the subject of anxiety in connection with BFS. Therapy was recommended, and I was prescribed an SSRI.
At that point, therapy did not help me very much. Looking back, I think the main reason was that I remained convinced that my problem could not be psychological and that an undetected illness had to be causing it.
As long as I held on to that belief, I could not genuinely accept that the anxiety itself might be part of the problem. To me, the symptoms were the only problem—not the way I responded to them.
The SSRI did, however, help me remain calmer for a longer period. Whether that was due to the medication itself or a placebo effect honestly does not matter to me. After almost two years, I finally experienced a longer period during which I was nearly symptom-free, apart from occasional muscle twitches.
New Symptoms, New Fear
Then new symptoms appeared. The pressure in my throat became stronger, I once again noticed more saliva in my mouth, and I had the feeling that the left corner of my mouth was constantly wet and that saliva was leaking from it.
Naturally, my mind now jumped to bulbar A**, and my anxiety shot up again. I went back to my neurologist, and once again the EMG was normal. This time, however, even that was not enough for me.
I became convinced that I needed to see an absolute expert. Eventually, I found a doctor who had previously led an A** specialist clinic and booked an appointment with him.
He was very direct—and at that moment, that was exactly what I needed. After I described my symptoms, he asked how he was supposed to help me. After all, I could still move everything normally, I had strength and I looked fit. He had already guessed that I was afraid of having a motor neurone disease.
He smiled and told me that almost every month, someone my age or even younger came to see him because their muscles were twitching and they felt weak. I am now almost 40. He asked me to guess how many of those patients had actually turned out to have A**. His answer: not a single one.
He also told me that he had treated hundreds of people with A** and that only two had been under the age of 30. The others had been considerably older.
He also explained, in essence, the difference between a subjective feeling of weakness or rapid fatigue and objectively measurable loss of strength. By that, he did not mean feeling as though you have less strength. He meant, for example, genuinely being unable to push against even light resistance.
He said that a few clinical examinations often allowed him to assess quite reliably whether there were signs of a serious neurological condition. In my case, he saw no such signs whatsoever.
At the same time, he emphasised that my symptoms were not imaginary. In his assessment, however, they were not caused by a neuromuscular disease. Instead, he thought that several factors might be interacting—including anxiety and possibly metabolic issues or deficiencies involving substances such as calcium or potassium.
What Ultimately Helped Me
So what actually helped me? Honestly, it was not one appointment, one examination or one sentence that suddenly changed everything.
It was a combination of the statements made by my neurologist and the specialist, the long period without any real deterioration, exercise, the SSRI and—above all—doing considerably less research.
I still experience symptoms today. I continue to have a subjective feeling of weakness and muscle twitching. The crucial difference is that I no longer give them much space in my life.
I accept that they are there and do not immediately start another round of research. I do not instantly test my strength or search for a new explanation.
When the urge becomes particularly strong, I deliberately distract myself. Often, after about 30 minutes, I realise that it has already become better. In the past, I would probably have spent those 30 minutes testing my body and searching for symptoms online. By doing that, I might have kept the anxiety alive for hours or even days.
Today, I try not to react to every thought and every physical sensation. It does not always work perfectly, and there will probably be moments in the future when the anxiety becomes stronger again. But I now know that I do not have to follow it every time.
I am also going to begin therapy again. This time, I am approaching it with a different mindset. I no longer want to prove that my anxiety is justified by an undetected physical illness. I want to address the anxiety itself and learn behaviours that will help me deal more effectively with both the fear and the symptoms.
That does not mean that I think my symptoms are imaginary. They are there. But I have realised that I can influence how much space I allow them to occupy in my life.
Why I Am Writing This Long Post
First and foremost, I am writing it as a conscious conclusion for myself and for a period that consumed an enormous amount of space in my life. For the past two and a half years, a large part of my thinking revolved around my symptoms and the fear of a serious illness.
Fortunately, I have a job that I was able to continue doing well despite everything. I also have an incredibly patient and understanding wife, as well as friends who supported me.
But things could have turned out differently. I could have fallen much deeper into this spiral and potentially jeopardised my job, my marriage or my friendships.
That is why I want to make other people in a similar situation aware of what such an anxiety spiral can do to your life. I am not trying to tell anyone what their symptoms mean. I cannot and do not want to do that. But perhaps my story can help someone recognise their own patterns of behaviour sooner.
What I Would Tell My Former Self Today
Have your symptoms assessed by an appropriate specialist, and speak openly about your anxiety as well.
For a long time, I spoke only about my physical symptoms and treated the anxiety as a logical consequence of them. Looking back, I should have explained much earlier just how completely that fear was controlling my everyday life.
Take the specialists’ assessments and the actual course of your symptoms seriously.
After every normal examination, I found a new reason why it might still not be sufficient. I kept moving the point at which I would finally allow myself to feel reassured. As a result, the spiral started all over again every time.
Stop searching online for absolute certainty.
ChatGPT, Reddit, Google and other online sources do not have the one answer that will silence your fear forever. Quite the opposite: You become increasingly consumed by the subject and eventually convince yourself that you are the one exceptional case to whom none of the previous assessments apply.
You can spend years trapped in this cycle without ever finding the certainty you are searching for.
Do not turn exercise and everyday activities into constant strength tests.
Exercise helped me. At the same time, however, I used it for a long time as a way of continually checking myself. Every exercise became a test, and every bad day became possible evidence of deterioration. Movement, strength training, endurance and flexibility should be part of your life—not your daily self-administered neurological examination.
Do not use your wife or someone else as an instrument for measuring your grip strength :-)
She can support you, but she cannot give you the absolute certainty your anxiety demands. No handshake and no yoga pose will provide lasting reassurance if, only a few hours later, you are already searching for the next piece of evidence.
Do not see therapy as an admission that your symptoms are imaginary.
That is exactly how I viewed it for a long time. I thought therapy could not help me because my symptoms were physical. Today, I understand that both things can exist at the same time: real symptoms and anxiety that determines how I respond to them.
Have potential deficiencies investigated within a reasonable medical framework, but do not keep ordering new tests in search of one hidden explanation.
I spent a great deal of money on doctors, blood tests and mineral analyses. Yet my anxiety always found another possible cause that might not have been investigated thoroughly enough.
When the urge to research appears, do not react immediately.
Distract yourself first and give the feeling some time. Today, I often find that it has already improved after about 30 minutes. Not every thought needs to be pursued, and not every physical sensation has to be explained immediately.
My Personal Conclusion
Perhaps moving on does not mean that the muscle twitching or subjective feeling of weakness has to disappear completely. Perhaps it simply means that these symptoms no longer get to decide how my day unfolds or how I spend my time.
I do not know whether every symptom will eventually disappear. But I no longer want to make my life dependent on that happening.
I cannot tell anyone what their symptoms mean, and my story is not a substitute for an individual medical assessment. All I can say is that I spent more than two and a half years terrified of a future that, to this day, has not happened. At times, the anxiety—and the way I responded to it—took more of my quality of life than the symptoms themselves.
Writing this post is another step towards bringing the past two and a half years to a close and no longer giving my symptoms more space than they deserve.