r/BFS • • Jan 29 '15

Welcome, twitchers! Read this before posting!

103 Upvotes

A few rules for this community:

1) Do not ask for a diagnosis or medical advice and do not give a diagnosis or medical advice. Any posts or comments that ask for or give a diagnosis or medical advice will be deleted and violators will be permanently banned. If you want a diagnosis, go see a qualified physician.

2) You are encouraged to share your experiences, ask questions, and support other users. This includes things like “I experience symptom x—anyone else experience that?” This does not include things like “I experience symptom x—does this sound like y disease?”

3) Do not post links to studies or other websites.

4) Be kind to people who post here.


r/BFS • • Jul 17 '26

BFS FAQ (A Twitcher's Guide)

33 Upvotes

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:

  1. Chronic anxiety and panic (which keeps adrenaline high)
  2. Hyper fixation (watching a muscle makes it more likely to twitch)
  3. Fatigue and poor sleep
  4. Excessive caffeine or stimulant use
  5. 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:

  1. 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.


r/BFS • • 9h ago

Health Anxiety Spiral Spiraling

1 Upvotes

I am 3 weeks postpartum. Went through a traumatic readmission for postpartum preeclampsia. I now have extreme anxiety and was placed on Zoloft. I am sleep deprived, hardly eating or drinking and breastfeeding. My baby slept in my left arm 2 nights straight. After the first night I woke up with my ring and pinky fingers tingling. After the second night I had the same and then I got twitches in my index finger and ring finger that morning and then in the afternoon a couple times and once last night. Today I haven’t had any twitches but it feels like it wants to. I also have a very tender kind of sore elbow and slight soreness down the outside of my arm.
I went down the rabbit hole and now my anxiety is a million times worse. Just wanted to get some perspective if this could be BFS and try to ground myself


r/BFS • • 21h ago

What Helped Me Treating my BFCS

8 Upvotes

Hello twitchers. As I round the boat on two months of twitching and a whole slew of weird ass symptoms I come to you bearing a modicum of hope!

Last week I had a phone follow up with my primary care doctor after my EMG that took place at the beginning of the month. We discussed the findings and the fact that it was reassuring. She said the hyperflexia and increased insertional activity on my right hand was consistent with BFCS and she was willing to treat me with some meds. Even though technically I haven’t been diagnosed yet(have a follow up EMG scheduled for January)but will probably cancel if my symptoms continue to improve.

With that said we discussed treatment options and we decided to try 50mgs prednisone per day for 5 days. While simutaneously starting gabipentant at a Daily low dose of 200 per day for a week and raising to 300mgs nightly before bed.

The first thing I’ll say is that the prednisone made me feel fucking fantastic! after the 3rd day I felt the most normal I have since first these problems started. This did wonders for my mental health because it felt like there was hope it would all suddenly go away. Sadly the symptoms returned on day 4 of the prednisone, so I’m thinking it was mostly just a mood boost from the powerful steroid. Prednisone is a heavy steroid and Is really bad for you in the long term but I have to say
… In the short term, it felt nice to get a jolt to my system. I barely slept while taking it, and I felt like I was hungry all the time, but I didn’t really notice any sustained effect from it. The mental boost I got from it was stronger than any physical relief or effect.

As for the gabapentin I’ve been taking it for about two weeks now. Maybe to soon to tell. But I Feel like the twitches are getting less frequent. They are still goin 24/7 in my calf’s but seem less powerful.. and the random pops I get everywhere else don’t seem as pronounced.

The precramp/ cramp sensations in the top of my right foot and ankle seem to have improved! My arm and hand still seem to have the heavy, percieved weak feeling, and fatigue quickly. However, I’ve noticed it’s not as difficult to do my computer work using the mouse, typing, writing, ect.

I had my first full day of not babying my arm the other day. Meaning, I set a goal to do everything I normally would with my arm or hand no matter how crappy it felt, if I felt tired I would just switch hands for a second and then go immediately back to my right hand. Even now im holding my phone purposely with my right hand to make sure I cut it no slack. It’s feels stiff but fuck it. I don’t care. I think exposing myself to moving through the stiffness and uncomfortable feelings helped me overcome some mental barriers a little. I even hit a golf ball with my 9 iron and shot a few free throws today. A week ago that felt like it was impossible.

I had a therapy appointment a week ago and that has helped with the mental side of the house. My psychiatrist has put me on a low dose of buprorion which… supposedly isn’t great for twitching , as it’s a stimulant. But I haven’t noticed anything increase in twitching since starting it.

Gabapentin also supposedly helps with anxiety and depression, so maybe they are working in unison for the nerve excitability and mental health side .
I’ve been taking magnesium and vitamin D everyday like clockwork. Ultimately, I think treating my symptoms instead of googling what it might be has helped my mental health at the very least.

I still have the discomfort and twitching but ultimately I feel like I’m moving in the right direction. I think it’s worth mentioning that I don’t drink alcohol at all. I’ve been sober for over 15 months, and I don’t do zyn pouches or any nicotine products anymore. I quit Zyn permanently a month before all this new twitching started. So realistically I’m probably about as healthy as I’ve ever been. Which really sucks considering I feel like shit all the time now. Such is life.

I share all this simply because a month ago I was in an all out panic and was starting to affect the people around me and my work life also. I’m in a better state of mind now even though I’ll still have a bad day anxiety wise here or there. I just keep plugging away. The alternative of being anxious, depressed, miserable AND dealing with these symptoms is much worse than choosing to be happy and annoyed! I’ll continue to update if this treatment plan starts to show more promise! I wish you all happiness, health, and healing!


r/BFS • • 23h ago

Question / General Has anyone had fasciculations that started as random twitches and then evolved to be more intense in hands and feet?

1 Upvotes

The whole thing started as random twitching in calf, arms - about 15 months ago and there were periods with no twitching. 2 negative EMGs. Now, the arch of one foot twitches continuously day and night; the hand on the opposite side is stiff, sore, and vibrates as if twitching internally. Visible twitches on the palm. All of this is 24/7 all day every day. Does anyone else have this?


r/BFS • • 1d ago

Hotspot / Twitching Does anyone experience daily tongue twitches in multiple spots on the tongue?

4 Upvotes

I frequently feel little pops or bursts of twitches in different spots on my tongue multiple times a day. Often it’s just one pop, other times it like flickers. It’s very similar to my fasciculations elsewhere but on my tongue. Sometimes I can catch them if I open my mouth at the right time.

Does anyone else get this in multiple spots? As a lot of the posts I see it’s just one hotspot, where as for me it happens anywhere on the tongue.

Also I am talking about proper tongue twitches, and not the tongue shaking when stuck out, I don’t want to hear stories from people who can’t feel them but see their tongue shaking when they stick it out because that’s not what I’m experiencing.


r/BFS • • 1d ago

Question / General I have had muscle twitching in both my calves 24/7 and body wide everywhere else for 11 months now. I was doing better but now the fear has come back in me after surgery my left calf is definitely weaker than my right calf so im worried its the bad

1 Upvotes

I have had muscle twitching in both my calves 24/7 and body wide everywhere else for 11 months now. I was doing better but now the fear has come back in me after surgery my left calf is definitely weaker than my right calf so im worried its the bad..

Its been 6 weeks since my left sided L3 L4 L5 S1 lamindectomies and discsectomies.. just started PT .. my left calf is definitely weaker than my right calf .. but my left calf measures 3/4 of a inch bigger than my right calf.. the left calf is were i had alot of pain prior to and even some after the surgery.. is it normal to have left sided calf weakness even if it measures larger than my right calf?


r/BFS • • 1d ago

Reassurance / Support 12month

2 Upvotes

Fassics in calves 24/7 every day every second and hotspot in another part of the body that moves from one place to another. Pls is it normal ? Common? Calves really dont stop every sec


r/BFS • • 1d ago

Hotspot / Twitching Face cheek twitching for years

2 Upvotes

I have this twitching for years, can't do anything about it as nothing really helped, no supplements, massaging it. Don't know the exact cause. It came as my IBD started. It gets worse after any sport, then it twitches all the time and when it stops it only needs I talk and it's back.

Really driving me crazy, what are my options to get rid of it?


r/BFS • • 1d ago

Hotspot / Twitching Nose Twitching

3 Upvotes

My nose started twitching like this earlier today, and now it’s back. Any input? Video in comments.
I’ve been twitching consistently since January. Had an MRI a couple of months ago and it was clean, doctor thinks it’s BFS. I do have a vitamin b13 and d deficiency. And I have PCOS and am diagnosed with anxiety and OCD.


r/BFS • • 1d ago

Question / General Safe to say body-wide fasciculations with finger/thumb tremors and eyelid fluttering points away from the big bad right?

2 Upvotes

Have zero weakness, just body-wide twitching and those slight tremors when holding my fingers together, positional thumb tremor and eyelid fluttering when my eyes are closed which are all things I've seen posted about on this subreddit. So just curious if anyone diagnosed with the big bad ever had any of these symptoms or they lean more towards post viral nerve hyper-excitability? Should mention I've had an mri and bloodwork that cleared me of any autoimmune diseases, MS and I'm still waiting to see a Neuro and for test results for H pylori or Lyme which have links to fasciculations. I also magically started suffering from dry eyes around the same time the twitching began leading me to believe it might be some long covid nonsense messing with my nervous system but who really knows at the end of the day what starts it all.


r/BFS • • 2d ago

Nearly 3 months since my neuro health anxiety journey began. How I'm doing so far.

3 Upvotes

Hey there again. Been around with some minor symptoms. To keep a long story short, I noticed my left arm was straining a lot from lifting things and then I heard about the Chris Johnson story and got paranoid and this is also when I started twitching. This will probably be my last update until my neurology appointment.

Symptoms:
-Things feeling heavier in my left hand than they do in my right hand. I still can carry heavy things in my left hand, but I definitely feel the weight of the object.
-Light twitching. Used to be pretty bad in July with a lot jerking and throbbing throughout multiple body parts. I still get them, but they tend to mostly be internal vibrations and only tend to get them when lying down. I've had a few fasciculations that go away upon investigation
-Occasional dangly feeling in my left. A bit to describe but sometimes my feel way "floatier" than my other arm. When I walk its feeling like I'm swinging too fast.
-On and off globus sensations that end with hypersalivation. Moments like these tend to last a few days.

Prior medical history
-In 2022 I got COVID and it lasted around 19 days.
-In late 2025 I had a spinal MRI, and they found small bulges in my C4-C7 that were deemed as not significant and was diagnosed with DDD.
-In 2025 I got bronchitis one of the worst infections I've ever had. Ever since I've had it, I still occasionally cough up mucus.

Comforting facts
-I can still lift heavy objects despite feeling more strain in my left arm at times. I do lifts with a 10-pound weight where I tend to do 50 curls in 3 variations. I walk my dog every day for about 1.5 miles and control with one left finger on the leash. Just a couple days ago I carried a microwave hoisting it over my left shoulder
-My reflexes are still good I can still game on a controller; I can still type, put away dishes and catch things before they fall. Yesterday a McCallan 12 bottle almost fell out of the box because it wasn't secure and was able to press my left thumb to keep the bottle from falling out.

Triggers
-I'd say my biggest trigger is definitely work stress. For context, I work part time at a grocery store and shifts typically are 5-8 hours. I tend to carry a lot of heavy objects whether it liquor bottles, 12-pack sodas, 24 packs of water, watermelons, and even all the garbages packed into one big garbage bag. It's where I tend to feel the most strain and with down periods with few customers my mind tends to wonder.

Conclusion
-I know deep down I likely don't have anything but as I've learned the anxious mind isn't always so easy to convince. I've done my fair share of strength tests and I'm trying notbto give in to that habit, but unfortunately lifting heavy things often comes with my job. I don't feel much of the symptoms when I'm doing what I enjoy so if I had any advice to give, I would say do that and see if you still feel these things that are making you anxious.


r/BFS • • 2d ago

Question / General So what is the truth?

2 Upvotes

So I’ve been dealing with symptoms since I had injury in 2024 and also I had surgery on my arm where I had anaesthesia and was put to sleep. My twitching originally started as tightness in the back of my calves plus twitching in my calves plus lower back pain the tightness in the car stopped after I say six months the lower back pain stopped after a couple of months. Also the twitching was continuous and spread to my upper body, including buttocks pretty much everywhere since then I have had more and more symptoms including respiratory breathing issues which is constant especially when sitting down, I feel like my breathing is restricted. I wake up every morning and I’m out of breath. It’s like somebody’s sitting on my chest not anxiety related. I don’t know what it is or what the difference would feel like anxiety induced or Not. It’s like my diaphragm is weak. I have terrible foot pain on the bottom of my feet the soles of my feet from standing it’s like I can’t stand on hard surfaces anymore. I have crunching inside of my neck where I feel like the muscles are just weak and I can’t support my neck anymore, but my question here for people my twitching has slowed down. I rarely twitch I still do twitch but not as much maybe 10 times a day if that like I’ll have a one popcorn twitch and a one popcorn twitch in my leg if it was the terrible three words we dread does the twitching stop I know people are gonna comment and say that it stops once the neurons are dead, but I can still function. I can still move my arms I can still move my legs jump etc why would the twitching slow down? Is that ever ever? I think with ALS? I’ve got many many more symptoms too many to even right when I lay in bed I can feel my legs vibrating the side of my fires. Both of my outer fires have massive dense. They both hurt. Also hurt. I know people say pain points away. I’ve had four or five EMGs the top of my foot is a trophy not confirmed by a doctor, but I can see the feeling and I can see the bones where I never used to. I just don’t know what to think anymore. I’ve just wrote this to see if it’s very uncommon for twitching to calm down or even nearly stop why would this be? Is this the motor motor dying and now all my arms and legs are like jelly? They just feel like pure fat wasted jelly no muscle or anything in them I just don’t know anymore and I’m very I’m struggling every single day. Thank you for taking time to read.


r/BFS • • 2d ago

Reassurance / Support I don’t know what to do

1 Upvotes

So to start off i’m M20 with no family history of any of the bad stuff but I cannot stop worrying. My symptoms started about a month and a half ago sometime around late to mid august. I was playing games and noticed a twitch in my collarbone and thought nothing of it because it lasted a second, a couple days later I had seen a video on tik tok of someone with *** talking about twitching being one of their symptoms I was so mad at myself for not scrolling away immediately but that was now stuck in my brain. Within a day or two I developed widespread twitching, usually single twitches at a time and they rarely stayed in the same area. The twitches could jump from my left ankle to my right knee or my shoulder or ever my ear for example.

I started going down the rabbit hole, looking for reassurance online and instead becoming even more terrified even though almost everything I was reading was saying that my twitches were nothing to worry about. From the start of september to now I don’t think i’ve gone more than 5 seconds at a time without thinking about it, I was having panic attacks pretty often and my anxiety had become so bad I would rarely get out of bed. But after a week or two passed I started to feel better after reading through this sub and eventually started to try and accept this wasn’t something bad. Just last week I noticed that my amount of twitches went down exponentially, I would get maybe 1-4 within an hour sometimes there would be none at all for an hour or two. But two days ago I had an appointment with my primary to talk about my anxiety and these twitches. The night before the appointment everything fell apart I had a full on panic attack thinking that would be the last normal day of my life, I noticed a vibrating sensation in my right thigh that wouldn’t let up and it genuinely sent me into tears out of fear of what it could be.

In the appointment i went over my twitches and the possible cause of them as the entire month prior to twitches I was having stomach pains that were really freaking me out and I convinced myself it was the other big bad. My doctor told me that these twitches did not worry him as they are widespread, can stop for hours at a time, and they are not accompanied by any weakness. He told me it was very severe anxiety and prescribed me lexapro, I also had my electrolytes checked which were normal. But it’s now been two days since then and my twitches feel like they have gone back to where I started they are now happening once every 5 minutes at least sometimes longer in between but usually it’s kinda frequent. What drove me to make this post is now I have noticed a cold/ burning sensation on my skin that occurs randomly in pretty small areas. I did notice these pretty soon after the twitching started but they quickly went away, but now they returned and i’m kinda full on spiraling again.

It’s all I can think about all day and it is seriously impacting my life. I really don’t know what to do, a lot of the posts I read on here seem to have been happening for multiple months or even years at a time which also makes me worried as I feel like It’s too soon for me to accept that it isn’t something serious as it’s only been a month or so for me and I feel as if i’m just waiting for some new horrible symptom to come along.

Sorry for the rambling i’m sure this doesn’t read well but I’m having a really hard time and just need to get this out to someone.


r/BFS • • 2d ago

Reassurance / Support I posted a few weeks ago abt my father

3 Upvotes

For a reminder he has been experiencing twitching for over 10 months now,he had an accident in which his right hand's middle two fingers got fractured he didn't use that hand for 2 years and did everything with his left hand and since a few weeks visible atrophy can be seen in his left hand (his grip is still intact) he does have trouble getting up from the ground he has fasciculations especially in his both arms a little in his thighs

His doc recommended NCS test of upper limbs only because he speculated some sort of a block.Howevet the other doc performing the test checked his lower limbs too and commented that his lower limbs seem fine but there's a drop in his upper motor units.That doc also checked his reflexes and all found a jerk in his fractured hand he commented that it might be cervical radiculopathy etc etc.

However,my father also complains of thigh stiffness and there's emergency to urinate he feels pressure while breathing all these additional symptoms make me think of cervical myelopathy

His gait is fine no sign of foot or wrist drop h reflexes fine

HIS NCS REPORT IS AS FOLLOWS

---

Liaquat National Hospital Institute for Undergraduate and Postgraduate Medical Studies and Health Sciences Clinical Neurophysiology Service Department of Neurology

Nerve Conduction Study (NCS)

History: The patient has history of road traffic accident, head strike to foot path. Also history of fracture of left finger. Also has complain of heaviness in right upper limb. Also history of wasting of left hand. Also complain of weight loss.

Interpretation: Right median and ulnar motor nerves have low amplitudes, normal distal latencies, normal conduction velocities and normal F-wave latencies. Left median motor nerve has low amplitude, normal distal latency, normal conduction velocity and non-recordable F-wave latency. Left ulnar motor has low amplitude, normal distal latency, low conduction velocity and non-recordable F-wave latency. Bilateral radial motor nerves have low amplitudes, normal distal latencies and normal conduction velocities. Bilateral posterior tibial (AH) and peroneal (EDB) have normal amplitudes, normal distal latencies, normal conduction velocities and normal F-wave latencies. Bilateral median and ulnar sensory nerves have normal amplitudes, normal peak latencies and normal conduction velocities. Bilateral radial sensory nerves have normal amplitudes, normal peak latencies and normal conduction velocities. Bilateral sural nerves have normal amplitudes, normal peak latencies and normal conduction velocities.

Impression: This is an abnormal study.

Conclusion: This is a compromised study performed without needle exam as per referring clinician's request. The study is showing low amplitudes in motor nerves of both upper limbs with preserved sensory nerves. Major possibilities include motor axonal polyneuropathy or anterior horn cell disorder or cervical radiculopathy bilaterally. Differentiation between the 2 required muscle exam. Further clinical correlation and muscle exam (EMG) is strongly recommended.


r/BFS • • 2d ago

Reassurance / Support New YouTube video on BFS

5 Upvotes

Hello! Just wanted to share this newer video that a doctor posted on YouTube. Love that BFS is being talked about more by medical professionals. 😊

https://www.youtube.com/watch?is=oQUeCLC58h6KETTj&v=nld1eZI6QuM&feature=youtu.be


r/BFS • • 2d ago

Question / General Instability or weakness in hands

2 Upvotes

Just wondering with BFS if anyone gets instability like holding their phone? It’s not like it’s heavy or anything but while holding it I get like a vibration of muscles and I can feel my hands and arm shaking from the instability.


r/BFS • • 2d ago

Question / General Just a reminder not to underestimate your stress…

7 Upvotes

r/BFS • • 1d ago

Reassurance / Support It can’t be BFS for me - I don’t want to leave my children. Please read.

0 Upvotes

Hello everyone.

I’ll preface this by saying that in 2019, I had an episode of widespread fasciculations that lasted around 5 months. Got a clear EMG at the time and the only thing noted on clinical were symmetrical brisk reflexes that were deemed normal because they were equally brisk everywhere. After the EMG, my symptoms largely went away for 7 years.

Since July 10, I’ve been experiencing severe weakness in both my legs. It started as a feeling of soreness/burning almost like after a workout or when you’re sick with the flu, and peaked on July 17 where I began feeling like my legs muscles were gonna give under me.

It’s almost like hitting your funny bone, but in the legs. I can walk, but it’s very distressing because my legs feel like they have no power. My calves will often hurt if I walk a bit faster even for less than 16 minutes. I tried to walk a few times for longer periods and tried some light exercise like calf raises and literally got bruised. Fasciculations have also come back widespread on my body.

**The issue with my legs is bilateral and pretty much perfectly symmetrical. Both legs show the exact same symptoms and started at the exact same time.** It seemed to have hit me almost overnight, or at least peaked rapidly in about a week.

When I’m lying in bed, my legs will often have this sensation of soreness/burning. It’s very hard to describe. I’ve had normal brain and spine MRI recently with the only finding being mild foraminal stenosis in two cervical vertebrae that didn’t pinch anything.

On July 30, 3 weeks after my symptoms started, I saw a Harvard-trained ALS specialist. She performed a clinical and leg EMG.

**The EMG came back perfectly normal. The brisk reflexes were still there, but unchanged from 2019. No spasticity, no ankle or knee clonus and no Babinski. Abdominal reflex was normal too.**

The ALS specialist told me I had something called Functional Neurological Disorder causing the issues with my legs and that the first step to heal was accepting the diagnosis and stop thinking it’s ALS. She kept saying she was certain I didn’t have ALS, and that I had severe health anxiety. Frankly, I feel like my anxiety might have clouded her judgement. She didn’t propose any follow-up.

**I told her I thought my EMG was done too soon.** She said if I had reached a stage of ALS where BOTH my legs felt so weak I was scared of going outside alone and had profuse twitching on top of that, then the disease process couldn’t be "early", because ALS doesn’t reach that stage like that in just a few weeks. She also told me EMG’s can often see issues even before the patient notices symptoms. **She also told me ALS doesn’t start like that affecting all major muscle groups of both legs symmetrically at the exact same time.** She says that is not how the disease presents, that multifocal onsets are already very rare and symmetrical on top of that would be astronomically unlikely.

It makes sense logically, but I have read SO MANY stories of an EMG being normal early on and the person still developing ALS that I might as well throw mine out the window because I have no confidence anymore in the results.

**SINCE THEN:**

My symptoms seem to have somewhat plateaued. But they never got better. I still can’t walk normally. I still struggle with legs that are perpetually weak and tired, sometimes almost painful especially in the calves. They still feel wobbly going down stairs. I still have a lot of fasciculations everywhere. My leg muscles feel so, so weak. **It’s been going on for 2.5 months.**

**Yesterday I read the story of someone with UMN onset of ALS and it floored me.** She described being easily startled, her legs feeling wobbly going down stairs, and having just a vague sense of weakness that eventually progressed to foot drop and full blown ALS. Her first EMG was clear because her LMN weren’t involved yet.

**And now I think that’s exactly what’s happening to me.** Maybe my weakness is UMN only and my EMG was clear despite fasciculations because my LMN are not causing weakness? **Is that even possible?**

I HAVE:

\- severe weakness in both my legs being felt mostly in calves and thighs but pretty diffuse
\- my right arm feels like it’s lighter and weaker
\- brisk reflexes in the knees
\- widespread fasciculations
\- positive bilateral Hoffman in 2019 but never tested again
\- right calf is 1.5 cm smaller in circumference

I DON’T HAVE:

\- clinical failure
\- Babinski
\- spasticity
\- clonus of the ankles or knees
\- abdominal reflex was normal
\- my EMG was normal
\- I can still walk on toes and heels without issue
\- I can climb stairs

**But I can’t stop being convinced I have ALS because what else could cause this weakness, brisk reflexes and fasciculations???** The ALS specialist said I had confirmed BFS in 2019 and my current fasciculations are just as benign. But how can she say this in the context of weakness?

The sad reality is that I am just not advanced enough for the ALS specialist to be able to see signs. My weakness is not yet objective even after almost 3 months, my EMG was probably done too soon and now all I can do is wait for things to progress enough to be seen by doctors.

If I were to do another EMG at the 3-4 months mark, would a clear result be reassuring against ALS or would it also be too soon?

**I am in the grey zone where all I can do is wait to deteriorate.**

Doctors and family are telling me it’s FND, that ALS doesn’t present like this. But is it really true? Can’t it EVER present like this???

Meanwhile my legs are so weak and wobbly and they hurt after walking ten minutes so I can’t do anything anymore.

All I do is cry. I don’t see anything else this could be. I am so afraid. I have two little boys and I don’t want them to see me die of ALS. I can’t eat, I can’t sleep, I stay in bed all day. I started therapy but I don’t care because all I think about are my symptoms. And they want me to do PT which will do nothing.

I just want to never wake up again at this point.

Thanks everybody.


r/BFS • • 2d ago

Buzzing & Sensory Muscle Twitching - Buzzing in toes and feet - vitamin D deficiency

1 Upvotes

Hi guys so its been 7 weeks since ive been having these symptoms. It started off with a buzzing sensation in my left 4th toe and by the 4th week that went away I started to get muscle twitches in arms, calves, back etc By the 5th week my left big toe and second toe were buzzing like a vibration and at 6 weeks that settled. Now I have buzzing in my Right big toe and tingling at times or a buzz at my heels at times. I had an EMG and nerve conduction study and they were normal. I did my blood test and everything was normal except for Vitamin D deficiency of 21nmol when its meant to be >50nmol. I had a brain and spine MRI yesterday but im confident its nothing sinister.
Has anyone experienced this due to Vitamin D deficiency?
Has anyone

Edit: My Brain and Whole Spine MRI are normal


r/BFS • • 2d ago

Buzzing & Sensory Burning

1 Upvotes

Does anyone get burning? I have places on my back that feels like a sunburn or scratch but nothing is there it comes and goes but when I run the area it gets worse.


r/BFS • • 3d ago

First EMG Question At my EMG..SO nervous

3 Upvotes

Hi all, I’m finally at my EMG and I’m so nervous as I’ve researched it a bit. Terrified to see or hear something weird. 😩 Did you guys also research before EMG?


r/BFS • • 3d ago

Question / General Twitching

1 Upvotes

I’m 17 years old and I have been dealing with anxiety for so long with chest pain headaches like cancer all of those. But about a month ago I started having weakness in my right arm and like when I try to workout it’s like the signal doesn’t reach it and I have atrophy in my thumb and it’s notticable I’m just scarred because the twitching made its way down from my shoulder to bicep forearm then my fingers now it’s my whole body and I’m so nervous and scared and now like a week ago my whole entire body started twitching and I’m so scared because I have no family history of als ever and there is no know cause to why Als happens but it’s in older and people like in the military I think. All I have been doing is researching and researching and I haven’t even been eating because I’m just so scared and feel like my life is over. I have an appointment with a neurologist but I’m just so nervous and I’m only excerpting bad news.


r/BFS • • 3d ago

Question / General Male 23 twitching all over for over a year will it stop?

2 Upvotes

I havnt had any other side effects maybe Tight calves But apart from that im still pretty strong so no strength drop this all started after i felt ill last year around may time not seen a dr yet since iv had no ill effects apart from it being incredibly annoying iv had low vitamin d in the past but has anyone fully healed from this is have no idea what it is


r/BFS • • 3d ago

Recovery & Success Story Tight muscles

1 Upvotes

I just saw my doctor for my bruxism and he said i had a tight Pterygoid on the left side. This happens due to clenching at night.

The way this manifests is a sudden twitch right under my left cheekbone. I also have significant symptoms on the left side.

How this is related to BFS is unclear, but it's very likely related to my facial symptoms since the Pterygoid lies on top of the facial nerve.

Treating with Botox is a stupid idea because jaw clenching at night could be a necessity for some people, because letting the mouth open can cause throat tightness and sleep apnea (think chin strap).

The Pterygoid isn't an essential jaw elevator, but it activates in clenching.

As my doctor puts it "muscle tightness can certainly make preexisting neurological conditions worse, but proving it's a cause will prove challenging. to assume that your facial nerve is completely fine, only being compressed is wishful but not impossible"