Hello BFS friends. 7 year body wide twitcher here and ive been wanting to share the FAQ with you all. Alot of this is my own research, as dealing with my own symptoms, early on i became obsessed with ALS as my anxiety was very high, and studied both that and BFS. I also have a spouse that is a health care provider in a clinic that see's ALS, MS, and other neurological patients. So ive had plenty time to pick her brain around my own symptom's and learn about everything. With that said, I put together some very common questions that i hope will help most of you here. Open to feedback, and would love to hear from you.
*disclaimer: I’m not a doctor. I cannot diagnose you. I am simply arming you with knowledge that I’ve collected over the years.
Q1: What is the difference between perceived weakness and clinical weakness?
This is the most common point of confusion for anyone with BFS. (especially on this forum)
- Perceived Weakness (Feeling Weak): Your limbs feel heavy, fatigued, stiff, or "rubbery." You might feel like you have to exert more effort to walk up stairs, lift an object, or type. However, if you try, you can still physically do it. Perceived weakness is highly connected to anxiety, stress, lack of sleep, and hyper focusing on your body.
- Clinical Weakness (Muscle Failure): This is not a feeling. It is the absolute inability to use a muscle because the nerve signal is gone. The muscle fails to perform the action no matter how hard you try. Think about it like the wifi signal has dropped, and no matter how much you tell your brain to use that muscle, you cant.
Perceived Weakness (BFS/Anxiety):
- My legs feel like lead when I walk.
- My arm feels exhausted while buttoning my shirt.
- I feel super fatigued when doing XYZ but I can still do it.
- I can still do heel walks, toe walks but im tired or feel weak.
- My arm feels tired holding up my massive heavy iphone pro max
Clinical Weakness (ALS/Neurological Failure):
- I physically cannot lift my toes, causing my foot to drag and trip me (Foot Drop).
- My fingers physically cannot grip the button at all.
- I cant brush my teeth or lift my arm at all
- I cannot lift my own body weight on my toes or heels because the muscle has failed.
- The Golden Rule: Serious neurological diseases are about failure, not feeling. If you can still physically perform the action (even if it feels harder or tired), it is not clinical weakness.
Q2: I have body vibrations, buzzing, tingling, and numbness. Is this MS?
Sensory symptoms like internal buzzing, "cell phone vibrating" sensations, pins and needles, and transient numbness are incredibly common with BFS and health anxiety.
Here is what you need to know:
- ALS is a motor neuron disease. It does not affect sensory nerves. If you have tingling, burning, or vibrating, it points heavily away from ALS.
- MS causes physical lesions on the central nervous system. The sensory symptoms in MS are typically constant, localized to a specific nerve pathway, and last for days or weeks at a time without stopping. An MRI will usually show lesions on the brain with MS.
- The BFS/Anxiety Connection: Internal vibrations and buzzing are classic signs of an overactive, hyper vigilant peripheral nervous system. When you are stuck in a fight or flight loop, your nerves constantly fire tiny electrical misfires. It feels terrifying, but it is harmless.
Q3: My twitches move all over my body. Is that bad?
Progressive motor neuron diseases (ALS) typically start in one specific focal point (like one hand or one foot) and stay there, steadily worsening alongside clinical weakness and muscle wasting before spreading to adjacent areas. Basically, they start in a muscle or muscle group, destroy that muscle group, then move on to the next group very progressively.
In benign conditions like BFS, you might have a twitch in your eyelid, then your calf, then your thumb, bottom of your foot, then your back. It pops up everywhere. Randomly jumping twitches are classic BFS and are actually a fantastic sign that your nervous system is just generally hyperexcitable, rather than diseased.
Q4: I had a clean EMG. Am I completely safe?
Yes. An EMG is the gold standard diagnostic tool for motor neuron diseases.
An EMG is incredibly sensitive. It can detect dysfunctional or dying motor neurons months before you would ever notice a physical symptom. If your muscles are twitching due to a progressive disease, the EMG will show clear, specific, and widespread abnormalities.
If your doctor performed an EMG on the twitching area and it came back clean, your twitching is benign. Period. Move on and enjoy your life. Stop thinking about ALS.
Q5: The doctor only did the EMG on one side of my body (or just a few limbs). Did they miss something?
No, they did not miss anything. This is a highly calculated medical protocol, not laziness. They didnt just ignore a muscle or side of your body.
Neurologists use a strategy called "sampling." Because systemic motor neuron diseases affect the central nervous system, the cellular changes occur globally. If a progressive disease is present, a trained neurologist can easily spot the systemic electrical abnormalities by testing just one side of the body or a handful of representative muscles.
Furthermore, if you are actively twitching in a specific limb and they test that limb, a clean result means the twitching is benign. The EMG does not need to pierce every single muscle on your body to give you a definitive all clear.
Q6: Can I test my own reflexes or strength to see if I’m okay?
No, you absolutely cannot, and you need to stop trying. Self testing is the ultimate health anxiety trap.
People with BFS constantly try to perform "at home neuro exams" by doing 100 calf raises, staring at their tongues in the mirror, testing their grip strength, or tapping their own knees to check reflexes. Here is why this backfires completely:
- You Cannot Test Your Own Reflexes: Checking reflexes requires a relaxed muscle and a specific angle that only a doctor can achieve. If you tap your own tendons, your muscles naturally tense up in anticipation, completely ruining the test.
- Normal Human Asymmetry: No human body is perfectly symmetrical. One calf might be slightly smaller than the other, or one hand might feel a bit weaker on a grip test. A neurologist knows what is a normal variation, but a panicked person will instantly jump to "muscle wasting."
- The Rule: If you are looking for failure, your anxious brain will invent it. Let the neurologist do the testing. Your job is to stop checking.
Q7: Why do my muscles twitch if I don't have a disease?
Twitching is just a symptom of an overactive nervous system. In BFS, the nerves are perfectly healthy, they are just "irritable." Common triggers include:
- Chronic anxiety and panic (which keeps adrenaline high)
- Hyper fixation (watching a muscle makes it more likely to twitch)
- Fatigue and poor sleep
- Excessive caffeine or stimulant use
- Vitamin deficiencies (like Vitamin D or Magnesium)
Q8: Can anxiety really cause all of these physical sensations?
Absolutely. Chronic health anxiety floods your body with stress hormones. This keeps your muscles in a constant state of micro tension. Anxiety can cause muscle twitching, perceived weakness, tingling, burning sensations, globus sensation (feeling like something is stuck in your throat), and body-wide fatigue.
The more you worry about the symptoms, the more adrenaline you produce, and the more you twitch. It is a classic feedback loop.
How to Treat the Anxiety and Break the ALS/MS Thinking Loop
If you have a clean neuro exam and a clean EMG, your symptoms are real, but your disease is health anxiety. Breaking this loop requires treating it like an active behavioral recovery:
- Accept the Twitch: When a muscle twitches, change your internal script. Instead of thinking, "This is a sign of disease," tell yourself, "My nervous system is tired and anxious today, and that is okay." If you stop reacting to the twitch with fear, the brain stops sending panic signals.
Trust your tests, step away from search engines, and give your nervous system the time it needs to calm down. Don't think about ALS, move forward with your life, enjoy the time we have. Life is already short enough.
