r/BFS

I’m looking for honest opinions because I’m still struggling with the fear of ALS, even though every neurologist I’ve seen has reassured me.

My symptoms started around September 2025 with widespread muscle twitching and muscle tightness. The twitching has actually improved a lot over time and isn’t really my concern anymore.

What worries me now is my right calf. Around January 2026 I noticed it looked smaller than my left. It feels softer and different to me, and it gets tired or burns more quickly during calf raises. I don’t know if it’s true weakness or if I’m hyperfocused on it.

Here’s everything I’ve had done:
4 EMGs/NCS over several months (including testing of both legs, all four limbs, and multiple muscles in my right calf) — all completely normal. By two different neurologists.
Brain MRI — normal.
Cervical spine MRI — normal.
Lumbar spine MRI — only a mild L5-S1 disc bulge, nothing significant.
Multiple neurological examinations with normal strength and normal reflexes.
Also my twitching has pretty much stopped.

CK: 56 (normal).
Neurofilament light chain (NfL): normal.

ANA: negative.
Other blood work has been unrevealing.
I’ve seen multiple neurologists, and every one of them has told me they do not think I have ALS. One neurologist even felt another EMG wasn’t necessary because my previous studies were normal.

Despite all of that, I can’t stop worrying because my right calf still feels different and looks smaller to me.
Also my leg is in pain it feels so different and weird.

If you were in my situation—with these symptoms, this amount of testing, and multiple neurologists saying it isn’t ALS—would you still be worried about ALS? Has anyone else had one calf seem smaller or feel different but end up with a non-ALS explanation?

I’m looking for honest experiences and thoughts, not just reassurance.

About a month ago, I was at work and I started having muscle twitching throughout my whole body
A few days later, the twitching continued, but would followed that was pain traveling down both arms sometimes to my left leg and right leg as well as numbness and tingling, depending on how I sat down or rested on her arm
I went to the emergency room and they just told me to get tested for MS bloodwork came back fine and I went to my PCP and they did more bloodwork for deficiencies, which showed nothing.
Now I will say I have a pinched nerve from a car accident. I was in one year ago, but the only thing I had was pain in my neck. I've never had these new symptoms.
No fast forward now I don't have pain anymore throughout my limbs, but what I've noticed is my right hand is weak when trying to grab objects open things, etc. now I did do emg a year ago as well as an MRI and the doctor did ask me about carpal tunnel I'm just a little baffled by my symptoms

Just want to start off by saying I’m aware of my severe health anxiety, but just wanted to know if anyone has gone through anything similar or knows of anyone who has.

My quick story :
17 months of twitching body wide
4 limb emgs all clean most recent June

I posted a few days ago, but things seem to be worse. My tongue feels incredibly weak. I wake up and the left side of my face feels heavy and numb. Twitching has increased in the neck and face not by a crazy margin but enough to notice. My voice sounds run down. I am not having any issues swallowing yet and I can still move my tongue around relatively normal and speech seems ok, but as I stated above my health anxiety has me in full panic mode probably the worst it’s ever been.

I guess I’m just looking to see if anyone went through something similar where they twitched for an extended period of time and then thought they were getting bulbar symptoms and what it ended up being or what they did to alleviate the symptoms. Thanks in advance and stay safe

Need advice. I been dealing with this widespread body twitching for 5yrs now. Only issue now it’s so intense. Alll throughout my body like morris code. I’m so scared. 40yrs old just turned 40. I had 3 EMGs had them during the first year. I just don’t know what to do. Is this als like it’s so intense. Need advice to talk me off out of this rabbit hole thanks

Hi all just wanted to share my story and insight for others and where I am at the moment with my journey. Id be interested if there is anyone who has shared similar experiences. 30 yo male. My twitching started in my calves in March this year while doing moderate incline treadmill cardio and riding a bike everyday to and from work. Initially it was in my calves for up to 2-3 months where I didn’t think much of it putting it down to heavy exercise and possibly electrolyte deficiency. One morning at the beginning of May I rode to the gym and started my workout doing 2 sets of leg extensions before my whole body started having fasciculations in every muscle you can imagine accompanied by nausea. I was taken to hospital by ambulance where they treated me for severe electrolyte imbalances. From that day onwards I have not experienced a day without muscle twitching in every body part I can imagine. Other symptoms I experience are numbness and tingling in my hands and feet and general fatigue. Gym performance is a little down but I can still lift the same weight but my volume has decreased. My creatine kinase levels are elevated at 230. I had a emg and ncs study completed 4 months post commencement of twitching in my calves and 6 weeks post other areas and they detected no abnormalities in their findings and they deemed it to be bfs. Any reassurance or advice in my situation? I’m really stressed that it still could be something worse!

Does anyone have any advice on how to stop them?? They are just so fucking annoying 😂 I've had them every single day for about 4/5 months now, I been through the whole ALS/MND scare and I'm over that now, but I really just want them GO AWAY. Generally speaking they are very infrequent and easy to ignore now, but if I have even one remotely stressful day, sometimes even just one stressful thought, they'll be firing off all over my body all day and it just feels so uncomfortable and irrtating. It's like bugs crawling around or bubbles popping under my skin. Sometimes I get a hotspot, quite often at the base of one or other of my biceps by the elbow, or on the back of my hand near my thumb, and I'll just feel and see it firing off ALL FUCKING DAY. It's so fucking annoying. Does anyone have any advice on how to stop it?

I’m 7.5 years into my twitching journey. It started in my left calf and has never fully stopped. It varies in intensity but is always there.
I also get random hot spots EVERYWHERE else. I’m sitting here looking at my calf as it puts on early fireworks display and thought I would post. I’m sure my story is both reassuring to prove to you newbies that it is quite possible to twitch for a long time and be fine it’s also probably distressing to some to know that yes, it may never stop fully.

Hi everyone,
I’m reaching out from Turkey because my family is going through an incredibly difficult time.

My grandmother was diagnosed with stage IV lymphoma. After receiving chemotherapy, she developed Stevens-Johnson Syndrome (SJS/TEN), which we were told is an extremely rare and serious reaction. She is currently in the hospital, and we are all very worried.

I’m trying to connect with anyone who has personally experienced SJS/TEN, or whose family member has gone through it, especially if it happened during cancer treatment or chemotherapy.

If you’ve been through something similar, I would be incredibly grateful if you could share your experience. I’d like to know how your recovery went, what treatments helped, whether your eyes were affected, and if there’s anything you wish you had known at the beginning.
Thank you so much for taking the time to read this. I sincerely wish everyone here good health and a full recovery.

Update: It's like there's this very subtle shift in breathing that occurs with being hunched, I feel like my breathing is shallow and fast. It's quite possible that it's a response to perceived suffocation. It's not real suffocation but it's a neural reflex.

This fast breathing could be why I'm twitching.

🔴This is not meant to be medical advice, I'm not teaching anything here, even my doctor thinks I'm making things up🔴

All I need is to watch my posture.

I believe that my horrible posture has led to a change in my ribcage shape, causing issues with breathing.

This ties into my very early theory of hyperventilation causing muscle twitching by alkalosis, the link is that bad posture can lead to subtle hyperventilation.

My doctor says "while this theory is very odd, it's not completely insane, and can be considered scientifically coherent, even if unlikely to be true."

Now this is pure speculation on my part, but I'm continuing this path because I'm seeing genuine improvement, it's not medically approved, it's not real science, although it's based on real science.

You can do your own research on respiratory alkalosis and its neurological symptoms.

Current treatment plan: good posture, and maybe having my doctor assess my ribcage after improving posture.

🟢The CO2 theory still holds true, and now i think it's directly connected to bad posture

🔴 the single most useful thing for me is making sure that my thoracic spine doesn't hunch forward, it's a very subtle shift but it's quite effective, the idea isn't to force anything but to gradually learn good posture.

While laying in supine, I'm keeping a pillow under my upper back, this keeps my shoulder blades from rounding forward.

And of course I'm trying not to slouch.

This is not a debate post. For any genuine scientific objections, please use the previous post.

I’m feeling a bit more anxious than normal since my 2nd opinion and first neuro appointment since my emg got moved up to next Thursday.

It all started in October of 2025 after a very stressful week. My twitching began in my tongue then spread everywhere. Now my left calf twitches the most out of anywhere. I did have a normal emg of both calves two months into twitching (December of 2025) BUT in February of 2026 I began feeling like I have tightness and tension in my left calf. It’s been checked by my friend who’s a physical therapist and she said it’s not spasticity. Does anyone else have this? Like the muscle sometimes aches but also just feels tight?

I feel like my muscles overall fatigue easier. I’m just exhausted by all this.

I’ve been experiencing body-wide fasciculations for a month now. It started in my face/eyes around 8 months ago, then spread. I get the occasional one in my tongue that I can feel when my tongue is at rest too. I can also see my tongue twitching constantly at rest, . Additionally, I have a dent in my thigh which I’ve been worried is atrophy.

All my worries were then amplified as I’ve recently had a second blood test done, with my CK level being 198 U/L . although this is within my lab’s normal range, which is 33–200. I’m still extremely concerned, taking into consideration my twitching and information saying people with ALS usually have a CK that’s slightly elevated, at the upper end of normal, or around 200–500. Although mine hasn’t reached 200 yet, I’m still worried with it being at the upper end of normal and only 2 off.

Hi there,

Long story from me. Work in Neurology so well acquainted with MND.

Symptoms started in October 2025 - legs twitching started in calf’s and progressed upwards to global continuous muscle twitching - all day everyday.

Had MRI’s, EMG/NCS at the time, saw multiple neurologists and even paid to see a specialist private neuromuscular professor. All said I had either benign fasiculation syndrome/chronic fasiculation syndrome/cramp fasiculation syndrome.

Alongside this I had lots of functional symptoms. Swallow felt like it was failing, felt weak. Spent weeks in bed constantly feeling an imminent demise.

I’m now back at work full time, back running again and back enjoying life.

Had repeat NCS/EMG on Monday which again shows no denervation/change since November so very happy with that.

I didn’t believe it at the time but things will get better, it’s not an overnight fix, it won’t take days or weeks it’ll take months. This awful syndrome can be managed and life can go on.

I’m a 29 year old female, I’ve been worried about als for 11 months, with problems with my thumb, but I got therapy and actually resolved my symptoms, but since I’ve started to use my thumb as normal, 4 weeks ago I noticed my shoulder started twitching and hasn’t let up, it’s persistent and also comes with heavy, tired arm, and I find it hard scrubbing overhead, I’ve read that muscle twitches that persist in one muscle is always bad, I’ve had brief muscle twitches everywhere for years but never one that stays, I’m that worried I’m losing weight because I cannot eat through the worry, I’ve called my GP and they’ve just sent me antidepressants. Any advice welcomed right now!

Does anyone have percieved weakness in their limbs?

My left arm and leg feel weak. I did a strenght grip test and there is a 10kg difference but i am right handed.

I know axiety plays a major part but im just wondering

Hey y’all. Been at this bfs thing for about 15 months. I’ve got a new one that’s interesting. Left leg from my hamstring to my toes feels like someone is strumming a guitar. Constant. I’ve had calf twitches, ham string twitches, arms, face, back, butt, everything. Comes and goes. This one has been constant. Anyone get this twitch before? Fun times.

Just wanted to say thank you to all you posters. I always feel better reading these threads. We are not alone.

Big hugs to all the twitchers, people with numbness, weird, physical sensations, hang in there. It’s just your body messing with you.

🙏💖🙏

Has anyone gotten an NFL test? I just got my results and I’m almost on the red so I’m freaking out. But it does say normal. Any opinions or thoughts would be greatly appreciated.

I have had 4 normal emgs, normal NFL and pass all clinical exams. Coming up on month 10. Twitching has gotten much less. Just concerned about my right leg feeling weird and smaller. Thank you for any help.

https://www.reddit.com/r/ALSorNOT/s/0pwhFjSXZb

How long does it take the brain to ignore these fasciculations? I also find myself getting other symptoms like being prone to aches and soreness easier. I've been having weird myoclonus even in the day time now. I would feel an electrical pulse that jolts my leg. I hope this is just a benign overstimulated nervous system. I've never heard of people getting "hypnic jerks" in the daytime while being fully awake. I've also been noticing I get more neuropathic itches where it feels like someone is lightly tapping a toothpick on my finger tips or around my body. Sometimes, my subtle myoclonus jerks is also accompanied with a sudden itch! Unsure if this is unrelated, but I have also noticed my knee joints pop as if it were like you were cracking your fingers. It's not painful, but I do wonder. Happens every time I begin moving.

Today marks exactly two months since my explosion of twitches began. I guess I can say it's less intense now? But I am still having the lingering anxiety, especially since my EMG is coming up in August.

Some twitches can actually even be painful, probably because of the sheer amount. Not the fact that they are painful in of itself.

Okay this is not a reassure me I don’t have the big bad thing we’ve all gone down the rabbit hole with, post.

Instead I’m wondering if anyone else has experienced this as I also have Peroneal nerve issues and I’m wondering if this could be BFS or is more likely to be the Peroneal nerve issue.

For the last month my left calf has been twitching 24/7. This started after I took some hard hits to the calf and while I was running/walking a lot. So definitely explainable (for reference I’ve been twitching almost 1 year every where). This is the longest hot spot I’ve had. Unfortunately, my right foot has also been firing just as long.

What’s really driving me nuts is my left leg just feels ‘off’. I’m not sure how to explain it. Not weak, I can still do everything and when I’m distracted and physically active I don’t really notice it.

It just feels, weird. Like there’s pent up adrenaline and it wants to jump. I have seen that can be due to the muscles never really getting a chance to rest and that’s the most probable answer.

Just wondering if anyone else has experienced this as part of their twitching. Not sure if I should be doing more or less of my peroneal nerve glides as those may actually stress my calf more. The joys of having multiple ailments lol

Anyways, thanks all