ALS: Concerns and Symptoms in Young Adults

Suspecting that you have amyotrophic lateral sclerosis (ALS)?

Hello, Dr.
Lai.
I am 23 years old and about to become a fresh graduate.
Around mid-April, I experienced persistent twitching under my right eye and in my left calf.
Since this had never happened before, I became quite anxious and went to a neurologist.
The doctor arranged for an EEG, which showed no abnormalities, but noted that while the eyelid twitching had stopped, the calf and the soles of my feet continued to twitch.
I then underwent thyroid function tests, and after a week, the results showed no enlargement or issues.
Later, I noticed that the muscle twitching would change locations and was visibly noticeable.
I also began to feel weakness in my limbs, so I visited an orthopedic doctor who ordered X-rays and found that I had mild patellar valgus.
The doctor advised me that frequently lifting my legs would help, and I purchased a brace.
I then noticed that the muscle twitching shifted to my quadriceps and the soles of my feet, but it was no longer continuous; it occurred about 3 to 4 times an hour, lasting 1 to 2 seconds each time.
During this period, I frequently searched online, which made me very anxious about potential neurological disorders or serious illnesses.
After a week or two, the muscle twitching spread to my thighs, calves, and soles of my feet, but it became less frequent and less intense, so I stopped worrying about it.
Recently, however, I started experiencing mild twitching again, and the locations expanded to include my back, abdomen, elbows, hands, thighs, soles of my feet, and even my mouth and buttocks.
I underwent nerve conduction studies, which revealed nerve damage in my left elbow.
I suspect this may be due to my habit of resting my head on my hand.
The doctor prescribed Riluzole 0.5 mg, B-complex capsules, and Choline Alfoscerate for a month, telling me that I wouldn’t need to return for a follow-up.
However, as I approach the end of the month, I still feel intermittent twitching throughout my body, with the abdomen, back, soles of my feet, and buttocks being the most frequent sites.
Sometimes, I also feel tightness in my thighs and a tingling sensation in my soles.
This has been going on for nearly three months.
During this time, I occasionally experience diarrhea, wake up suddenly, have vivid dreams, and my hands tremble.
I suspect I might have autonomic nervous system dysregulation, but I do not experience palpitations or increased heart rate.
However, I find that I tire more easily after exercise and feel fatigued to the point of wanting to sleep, and I wake up with weakness in my limbs, unable to make a fist and feeling my legs are weak.
This is really troubling, and I don’t understand why this is happening.
My diet and habits are relatively normal.
I wonder if it could be due to insufficient water intake or lack of exercise.
I am very concerned about the possibility of a rare disease like ALS and do not want to burden my family.
Is it common for such rare diseases to occur at the age of 23? Have you encountered patients with similar symptoms? I apologize for the lengthy message.

Xiao Fu, 20~29 year old female. Ask Date: 2020/06/23

Dr. Lai Xiangrong reply Rare Disease

Hello, many people experience the situation you described.
The subtle muscle twitching is medically referred to as "fasciculation." This twitching is quite common in healthy individuals, with eyelid twitching being the most well-known occurrence.
It can also happen in the muscles of the back of the hands, feet, and abdomen.
Common causes include caffeine or tea consumption, excessive exercise, fatigue, stress, electrolyte imbalances, or benign tremor conditions.
Some medications, such as steroids and anti-vertigo drugs, can also lead to this phenomenon.
These twitches often occur intermittently and tend to resolve on their own after a while, only to return later.
Rarely, such twitching can be associated with neurodegenerative diseases, such as amyotrophic lateral sclerosis (ALS), where muscle fasciculation occurs alongside various neurological abnormalities, such as muscle atrophy and reflex abnormalities, with specific findings on electromyography (EMG).
Since you have already undergone examinations without any significant findings, you should consider this a positive outcome.
If any issues arise, it would be advisable to consult a neurologist for further follow-up.

Reply Date: 2020/06/23

More Info

Hello, thank you for sharing your concerns. It sounds like you have been experiencing a range of troubling symptoms, including muscle twitching, weakness, and fatigue, which understandably have caused you significant anxiety. Given your age and the nature of your symptoms, it's important to approach this situation with a comprehensive understanding of potential causes and the appropriate steps to take.

Firstly, it's essential to recognize that muscle twitching, or fasciculations, can occur for a variety of reasons. These can include benign factors such as stress, fatigue, dehydration, or even excessive caffeine intake. In many cases, these twitches are harmless and may resolve on their own. However, persistent twitching, especially when accompanied by other symptoms like weakness or changes in sensation, warrants further investigation.

You mentioned that you have undergone several tests, including an EEG and nerve conduction studies, which have not indicated any severe neurological issues. This is a positive sign, as serious conditions like Amyotrophic Lateral Sclerosis (ALS) typically present with more definitive and progressive symptoms. ALS is a neurodegenerative disease that primarily affects motor neurons, leading to muscle weakness and atrophy. While it is understandable to worry about such conditions, the likelihood of developing ALS at the age of 23 is quite low, especially given your current test results.

Your symptoms of muscle twitching, along with feelings of weakness and fatigue, could also be related to anxiety or stress. The mind-body connection is powerful, and psychological stress can manifest physically in various ways, including muscle tension and fatigue. It might be beneficial to explore stress management techniques, such as mindfulness, meditation, or even counseling, to help address any underlying anxiety that may be contributing to your symptoms.

Additionally, you mentioned experiencing gastrointestinal issues, sleep disturbances, and feelings of weakness after exercise. These symptoms could indicate a need for lifestyle adjustments. Ensuring adequate hydration, maintaining a balanced diet rich in nutrients, and incorporating regular physical activity can significantly impact your overall well-being. Sometimes, simple changes in lifestyle can alleviate many symptoms.

As for your concerns about autonomic nervous system dysfunction, while you do not report classic symptoms like palpitations or rapid heart rate, it might be worth discussing this with a healthcare provider who specializes in neurology or internal medicine. They can provide a more thorough evaluation and determine if further testing is necessary.

In summary, while your symptoms are understandably concerning, the likelihood of a serious condition like ALS is low given your age and the results of your tests. It would be wise to continue following up with your healthcare provider, discussing your ongoing symptoms, and considering a holistic approach that includes lifestyle modifications and stress management techniques. If your symptoms persist or worsen, seeking a second opinion or further evaluation may also be beneficial. Remember, you are not alone in this, and there are resources and support available to help you navigate these challenges.

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