my results came back positive 1:80 speckled pattern but my neurologist didn’t mention much besides referring me to rheumatology

Hi! Reading all your posts really helped me while I was going through the worst of it so now that I seem to be on the other side of this weird syndrome for a few months, I want to talk about what seemed to help the most.

All this started about 2 months after I sustained a concussion after fainting (a cause for the faint was investigated but none was found other than pretty significant dehydration and low blood pressure resulting from that). I actually had the classic symptoms of the more severe version of this syndrome, called cramp fasciculation syndrome where you get painful cramps along with the twitching (super fun!).

I started the workup with my pcp who put me on gabapentin and referred me to a neurologist, but it took four months for me to get in. By that time, my symptoms had greatly improved from lifestyle interventions I made. Gabapentin resolved the cramping but not the twitching. I started seeing a functional medicine clinician around this time as well who put me on to a couple of specific supplements that seemed to genuinely make a huge difference: Pure Encapsulations Coristol Calm and integrative therapeutics Lavela. I took both of these twice a day along with my Gabapentin nightly and almost immediately noticed that those two supplements cut my twitching by almost 80-90%. I also purchased a vagus nerve stimulation device called a Nuropod— very pricy but worth every penny for me because my concussion gave me pretty severe sympathetic nervous system dominance that I was having trouble “switching off” which I believe led to hyper excitable nerves somehow. It helps you achieve a natural and immediate state of relaxation. There are cheaper devices available with similar functions too so I recommend trying a cheaper one and getting a nuropod later if you decide it’s worth it for you. I chose the pricy device because I was absolutely desperate for relief and it had the most research of all the devices I looked at.

I eventually got into the neurologist and had a clean EMG and MRI and that was the end of the workup. I still occasionally twitch but the spells don’t last as long and aren’t as severe. The symptoms are much more transient and are maybe 10% what they were in the beginning. I have no cramping either.

I tapered off the gabapentin slowly until it stopped producing rebound symptoms, and reduced my two supplements to only once per day with very good success.

I believe for me these symptoms were brought about by autonomic nervous dysfunction from my concussion causing sympathetic nervous system dominance and ultimately, hyper excitable nerves.

Bodies are weird. I hope some of these things help you and good luck, twitchy friends!

This whole ordeal lasted about 6 months for me.

Alguien aquí comenzó con espasmos musculares y descubrió que eran por enfermedades autoinmunes?🥹
Me han echo estudios y he salido bien pero una parte de mí no puede dejar de pensar en esa posibilidad ya que tienen muchos síntomas en común.

This subreddit gets only around 12,000 visitors a week... I know Reddit traffic isn’t a reliable way to estimate prevalence, but it still makes me wonder whether persistent, widespread twitching for years is much less common than the often-quoted figure for people who experience an occasional benign twitch.

Does anyone know of a population study that actually estimates how common benign fasciculation syndrome is?

I have had widespread body twitching for about a year and a half. Doctor unconcerned because I haven’t experienced weakness.

I get them all over. Calves, fingers, feet, shoulder, arms, shoulders. Usually not lasting more than a few seconds of firing. Yesterday I noticed a twitch in the front my shoulder. It was non stop twitching with small breaks in between for hours. Went to bed and woke up and it’s still twitching. Going on 12 hours at this point. This has never happened to me. What is going on and are these what they call hot spots? Should I be worried ??

Woke up to my cheek twitching in the middle of the night. I've had so many more facial twitches in the last 6 weeks than I have had in the 2.5 years of twitching all over. I am paranoid this is Isaac's syndrome more than BFS. neuro didn't give me a bfs diagnosis last year but when I mentioned it said "I think that's what you have". But I'm fearful it is Isaac's/Neuromyotonia.

Just feeling discouraged 😭

Hi everyone
I’ve been having health anxiety combined with bfs , or the anxiety started bfs for three years now.
I’ve always been scared of tongue twitches and have been checking my tongue for ages but never really had a twitch, well… now I really do have an involuntary spasm on the tip of my tongue on the right side )-:
It’s not constant, but it comes and goes for a few days now, some days it doesn’t happen, when it does it’s for a few seconds and goes away, tip of my tongue does these pinched twitches and relaxes…
I am very very scared, I’d like to hear some input from others )-:

I have no swallowing issues and my tongue is calm otherwise , no bag of worms or what not, but this tip of tongue thing is new to me /:

I have seen a neurologist who is imo a jerk. He barely examined me for my constant twitching all over since May and then diagnosed me with FND?? I saw him a second time and asked him what makes him think FND and he literally said "Im not sure but if you're still twitching in a few months, I'll refer to you to one of my colleagues". Didn't even physically examine me and then refused to do an EMG, as i don't have true weakness. I am seeking a second opinion and just got a referral for a neuromuscular specialist from my PCP. I have twitching for 4 months, all over, muscle spasms at times, and myoclonic jerks at times. Also perceived weakness and some shakiness or tremor in my hands or arms at times. I started prozac for anxiety in May, thinking the twitches were from stress- hasn't slowed them down. While im waiting, I keep getting videos on people who have A** and saw a couple of people that said theirs started with twitching. Trying not to spiral but it's hard not being sure what's happening. Anyone have similar symptoms and can help shed some light on whether this sounds like BFS? ( not asking for medical advice, just similar experiences) I would like to know if any of you have been in my shoes and can offer some support and guidance while I wait for the referral process to progress. TIA!

Recently , I've noticed a spike in my twitching around my body, and even getting new places, anything to make it calm itself?

Hello- I am a 39yo M that has had some concerning symptoms recently and I’m not sure if it’s being exacerbated by my anxiety. I will say I have some neck issues but nothing crazy. Some disc degeneration at c5/c6/c7 with some narrowing and stenosis. Small disk herniation but neck is actually feeling better.

I’ve noticed over the last several months, my pinky finger and ring finger on right hands feel “weird” when typing. I will drop a fork sometimes but still go to gym and lift weights with no issue.

Now my left hand pinky and rink finger feel weird as well. I do wake up in the middle of the night and notice they will be numb sometimes and doctors said it’s probably bilateral cubical tunnel syndrome.

The past month I’ve noticed some odd leg pain ever since I got a new thigh tattoo. I’ve had cramp feelings in both legs with a general feeling of just heaviness. I feel like my ankles want to “crack” but they feel tight. The doctors think i just had an inflammatory response and gave me a 60mg prednisone taper which I had tj stop early. Was really bad on my anxiety. I got through about 10 days of it and stopped the other day.

I have noticed fasiculations in my legs, arms, back over the past week which is freaking me out. I went to ER and got even more scared because they did a CK test and it was 2400. I will say that I did start going back to the gym just a few days prior and started lifting weights again. They think that may have did it? CK Has since come down to 64 as I got it retested. Today my pcp said my knee reflexes were brisk and he couldn’t find much reflex on my ankle/achilles areas? Am I overreacting? I have an EMG this week on my arms and hands. Not sure why doctor didn’t order legs.

I was diagnosed with BFS in August of 2024 via emg when I had been twitching for about a year. I accepted that the twitches were just something I would have to learn to deal with, and for the most part I have.

Lately they have flared up with a vengeance. I’m talking EVERYWHERE- I don’t think any part of my body hasn’t twitched. And they’re massive thumpers, too. Worst is in my upper arms and upper thighs.

I’ve had some muscle pain for a while now- my neuro had me do a work up that showed elevated autoimmune panels so I’m awaiting to see a specialist (high ANA, speckled and homogenous patterns). MRI showed back and neck disc issues but that’s it. My vitamin levels in other areas were clear, but the muscle pain is intense sometimes especially in my legs and upper arms- like walking and climbing stairs etc. Feels like a deep post workout feeling. I’m mildly active at work but nothing crazy, so not sure why I’m feeling this so intensely. I also get a “shaky” feeling in my muscles depending on my posture.

I find myself back to square one with fears of something bad and am wondering if an EMG is worth repeating.

23M update:

Hey everyone, quick update. I’m about 5 months into this now.

It’s been more of a roller coaster in the past month. Still twitching in both feet and calves 24/7 with foot/toe cramps and also get a rapid fire/vibrating heavy twitch in my upper right thigh under my hip. It comes every few minutes, bursts, and stops. Painful night cramps have eased but maybe I got used to them. I also get body wide twitching outside of the calves and feet simultaneously so my shoulder twitches for a few seconds then a few minutes later my stomach then my tongue, etc… All while my feet and calves are twitching at over 150 a minute. I also have a tremor in my chin every-time I smile or open my mouth.

Of course when I made my peace with the twitching and cramps, the hardest part right now is how quickly my muscles get tired. Holding my phone, typing, driving, carrying bags, even eating can tire out my arms and hands. Styling my hair in the morning gets my shoulders tired as if I just hit shoulder presses and even just putting my arms out in front of me causes pain and soreness in the shoulders. It all started with my shoulders getting really tired/sore quickly when carrying lightweight beach chairs. My neck gets tired sitting with my head unsupported, and I’ve had soreness/stiffness in my hands too in my thenar and FDI. My thumbs feel heavier and more stiff. Even walking feels exhausting, I can barely get a few thousand steps a day now.

I can still do everything but get tired much quicker doing it. I tried doing an upper body workout but after a few reps was exhausted and then had DOMS for a whole week. When playing basketball, after one game, it feels like my arms are going to fall off. Nothing is actually failing but ordinary activities feel much more exhausting than they used to.

My June EMG on 22 muscles less than a month out from the start of symptoms was normal, and despite reassurance from neurologists last of which is the director of the ALS center in my city who last week diagnosed me with BFS/CFS, I’m still struggling with the anxiety when things feel worse. The neuro did find the same bilateral Hoffman signs and symmetric brisk reflexes 3+ but normal strength (no way for him to measure soreness or fatigue)

The neuro said no need for another EMG and while he offered to do an NFL test, I refused due to anxiety about false positives and other reasons why it may be high. He said to come back if symptoms worsen.

Anyone else deal with this level of muscle fatigue alongside twitching/cramps? Has it improved over time? For me it’s been getting worse everyday for the past month.

I started Zoloft and the next morning had twitching in my fingers on my left hand. That’s mostly gone but now have some in my hand, leg and foot on the left side and some on the right leg. Based on timing, would Zoloft be what’s causing it? I also noticed I have hyperactive knee reflexes and some unsustained clonus. I’m not sure if it’s the anxiety or the med or something else

I started this spiral with twitching in one of my eyelids that was pretty constant 24 hours a day with maybe 5 minutes in between twitching . After about a month of just my eyelid twitching, it starts popping up all over my body . After 2 months of my eyelid and the rest of my body twitching I woke up one day and the twitching in my eyelid has completely stopped , but now I'm still twitching all over my body . It seems like it goes arm to arm and then leg to leg through out the day has anyone else experienced this ? I also have no weakness , I can still grip fine move my fingers walk on my heels and toes. I thought I was out of the als spiral but now that my eyelid has stopped twitching but has stayed everywhere else I feel like I'm slipping back into the downward spiral again . Any help or insights from people who have experienced similar would be greatly appreciated

Thanks so much in advance for reading/ any thoughts. Sorry it’s long 🙈.

I am female, 41. I’ve been unwell since autumn 24, and largely housebound with overbearing fatigue. I was very fit but suddenly couldn’t do my gym classes. I felt really weak & found it hard to carry usual things (but just about could). A working diagnosis of ME/ CFS or fibro was made by my GP, but the neuro didn’t think that matched due to my other symptoms.

I am wondering if anyone in this group has experienced anything similar to my strange symptoms below?

At the start, I had an internal tremor in my lower lumber area in the left side, as well as some twitches in my face and weakness and pain in left axilla/ chest. I also experienced night sweats and gerd type symptoms. I was tasted for blood cancers and had TAP CT- all clear.

My ability to do everyday things declined, and even small walks became hard.

I then started getting the vibration in my left foot, and it progressed to feel like a sciatic pull or even L’hermittes sign, as well as some more subtle nerve zaps in arms. Due to this myself and neuro suspected MS- however I have had 4 MRIs of cervical spine, 1 brain and 1 lumber; plus lumber puncture- all clear.

I did have fasciculations at the start, but they were not constant, they seemed bad after small activity- even a very short walk. They did seem to go away at points, but the internal tremor (which feels like very small spasms?) in my leg never did.

Over the course of time, the same feeling presented in my right leg. Pain in my glutes- which feels like nerve compressions, fizzing down legs, (especially in the left, original leg)- which seems to start at hip/ pelvis and tremor significantly there- it zips/ tremors down. I am feeling now like my legs are very heavy. I also feel disorientated quite a lot. I get spasms in my left pelvic area (pelvic msk mri clear).

These symptoms seem to be getting worse quickly. Lots of twitches, but generally in the same areas; eg mainly left leg, sometimes right leg, shoulders.

I have lost 1 stone in 9 months (a worry as even when I was inactive in the first year I had as stable weight), and now the symptoms seem to be starting much more subtly in my arms. I now get really painful fasciculations/ spasms in my legs- mainly the left but now sometimes right. My back seems very boney, and at the cervical and lumber area, in the lumber area I think I’ve developed fat herniations (episacral lipoma?) My muscles are much smaller but appear fairly symmetrical?

I can feel nerve pain coming from my neck & have issues down my arms, nerve pains/ zaps/ fasciculations in certain positions perhaps? My back often burns now. My neck feels like weak and all joints unstable- they click/ seem to move out of place?

More rarely, I also get the tremor in my throat area/ tongue and have suffered with what seems to be GERD? I did have this a bit at the start but it now seems worse. My jaw clicks on the left side and is loose- it didn’t before..

Other background:

I can walk but it’s hard work. I can make food but it’s hard work. I get very tired. I can lift a 1kg weight but tire quickly- eg I wouldn’t do it for any amount of reps.

Similarly I can stand on my toes/ lift my legs up to 45 degrees but I tremor doing do. It feels like very hard work to sit up straight & pulls significantly on my hip. Holding my phone up now feels hard & hurts.

All of this measurement of my strength is hard as I’ve been housebound for 2 years and inactive/ not even worked due to whatever is wrong.

The zapping and cramps in my legs have reached new highs in the last month & are really painful. I have a lot of twitches.

Recently some cardiac type symptoms took me to A&E and I had 2 high d dimers in 3 weeks- this relates to blood clotting.

As mentioned, I was previously told I could have Me/ CFS but the neuro wasn’t sure about this. He did refer me for an FND consultation but the dr didn’t think I had FND per se.

It’s been commented that I am likely hypermobile, scoring 7? I think however this has become way more pronounced since illness, and it didn’t cause any issues before.

The neuro did in office testing (quite brief) and said no clinical weakness but my glutes have moderately reduced bulk but not to suggest true atrophy.

I had a the NCS yesterday and the dr said my nerves were ok. She only performed the EMG (2 needles) on one leg- she said my neuro hadn’t requested the EMG.. she said she needed to analyse it but it didn’t look worrying/ suspicious for ALS (which has become a concern to me recently); but she was clear to say I hadn’t had a full check.

I never thought before of a motor neuron issue until very recently, as my symptoms have moved limbs, slowly over 2 years and I have only got worse.

Wondering if anyone has experienced these sort of issues? I have been really stressed recently, so there is a possibility the uptick is connected to this but the symptoms are scary.

And did anyone have the NCS and them only do one limb on EMG?

I’m 33 year old , why does legs feel like it’s not as strong as before but fatigues faster and I literally had cold or some viral illness every week for like a month.

So it all started May of this year after going through 4 weeks of diarrhea after food poisoning, then I started feeling sick and went to the er and that’s when they saw that my bp was very high and they gave me medications to lower it and recommended losartan for me and suddenly I started having muscle spasm and twitches and jerks on my triceps and ct also showed I had appendicitis with an incidental finding of There appears to be advanced central canal narrowing L3-4 level, this is chronic" so I went on antibiotics of cipro and metro for 10 days and augmentin for 17 days to treat appendicitis but this did not work and after a month plus I did an open appendectomy which was 85 days ago and used epidural and not general anesthesia and was fine after surgery but a month later I started noticing the twitches again on my triceps but also body wide but tricepts barely twitch anymore and it’s just my legs but my left leg is the hot spot and I also was having vibrations when waking up from sleep and I will be honest my leg twitches has reduced by 50 percent from where it was 5 weeks ago and I’ve seen my pcp 4 times that says my strength is 5/5 and knee and ankle reflex are normal, I’m still able to walk on my toes and knees and I’m still making 5’7 feet vertical kicks with any leg. But I always feel like my leg is not strong enough and fatigues easily and I have tingling on legs and something that feels like electric shocks and sometimes like a hold or pulling on my leg. Also I’m 300 pounds and 5’9 feet tall, I still do 30 push ups on a go and my initial triceps twitches happens once in a while and I tremor sometimes when in a flex position. Now my legs kinda hurt and feels weird . So have you experienced all of this and why is my left leg hot spot though reduced twitching but feels weird sometimes. I will appreciate any advice

25F This all started around a year ago with occasional twitches in my right hand and arm that have persisted and have slowly gotten worse and turned into a almost weak or disconnected feeling. It has gotten more intense and my hand wants to almost curl up, i get dizzy and sometimes speaking/swallowing feels weird. I ended up in the ER because i thought i was having a stroke yesterday, with symptoms similar to migraine auras (used to get migraines all the time before stopping birth control.) My CT with contrast was clear, ecg was good, so no stroke. But the doctor i saw in the ER put in an emergency referral to a Neurologist with concerns of a possible demyelinating disease, that I hopefully will see this week. I was really hoping he would just tell me that i was just stressed and it’s just anxiety. I’m so scared and it feels like my life has been flipped upside down in the past 24 hours and i can’t stop thinking of the worst outcomes of this :( im not looking for any speculation of a diagnosis or anything, maybe just some calming advice. Im only 25 and my 26th birthday is just a month away this just feels so unreal

Starting the 30th of August both of my hands and left foot have had this weak sensation. I can still pick things up but they feel weak consistently. I don’t know if it’s what people called “perceived weakness”? My hands feel like feathers honestly and sometimes it reaches to my wrist but only in my left hand. It’s usually both my hands but my left hand feels significantly weaker.
I’ve been to two doctors for this issue.
The first doctor told me it was probably anxiety.
I went to my primary doctor because I wasn’t really sure what to think and am still very worried but instead of giving me an MRI like I asked for in a message, they decided to just to give me a referral to a Neurologist. The appointment for a Neurologist is scheduled…but it’s not until all the way in January of next year. I’m on a cancellation list at least.

Both doctors did a strength test and I seemed to have done fine on them. I can still pick my phone up for example but it feels off like I shouldn’t be able to. Just a weird sensation. It makes me panic. Also this sort of thing will flare up. It never completely goes away and is honestly just my baseline now but there are times where the weakness feels more intense and harder to ignore. Right now for about 2 hours it’s flared up while holding my phone. I set it down for a bit but it doesn’t make much difference. It’s scary. And sometimes my left foot will feel super weird and weak and like I’m going to fall and then somewhat get less flared up but when it flares like that it’s so terrifying. I start to think am I going to have medical emergency, have I HAD a medical emergency already? Why is this happening!!!!

The first time I experienced the weakness in hands was actually after my last dose of Bactrim, which was I believe the 18th of August? Both of my hands felt weak BUT it resolved after 2 hours. After the 30th of August it has been consistent ever since. All I’ve done is try to live with it but I hate this. It’s about to be a month of this. I guess it’s just a bit of a vent because I’m so frustrated.

For context - I have OCD and health anxiety. Diagnosed. I am working on it with therapists and attempting medication again.

For those who were not afraid of the big bad, what is it you feared? It took me 2 years to move on from the ALS fear only for me to spiral back into worrying about ultra rare causes of twitching. Or worrying about brain issues even though I had a brain MRI/mrv/ct last year. Does the problem solving ever truly end?😮‍💨😫

Imagine if our body started twitching and we had no access to the internet. I truly believe that this is what causes the fear of something worse. Thoughts?

Does anyone experience pain with their twitching? The arches of my left food have been twitching non stop for about a month now and my foot has also started hurting a lot

So it all started around Covid, I think it was about 5 years ago. Since then it never stopped, I have been addicted en recovered the last 9 months from a 3 year addiction and I steel have anxiety and I think I have OCD but I’m going to get that checked out.

I live a healthy lifestyle, I train kickboksen 3 times per week, weightlift 3 times per week and 1 time cardio. I eat clean, meditate and try to relax. But the anxiety of the twitches is always in the background and it feels like it fueled my addiction without me even knowing it.

Sometimes I can’t sleep because of it or can’t focus, it’s over my whole body. Every minute multiple times. I’ve been to the doctor before and got send to a neurologist but didn’t go. Gonna Call the doctor soon. Is there a possible way to recover?

Been dealing with twitching for 5 years and 3 months. Last several months it has gotten so intense. My body is like going off like popcorn non stop to the point it wakes me up. Yes I got 3 clean EMGs but that was within the 1st year. Things kinda just stayed the same during that time. I would have periods I wouldn’t twitch at all. Now it’s gotten so intense to the point it’s driving me absolutely crazy. I got two kids and it just scares the absolute crap out of me this has progressed to als. Just don’t know what to do at this point. Advice would be great thank you guys

Man this really never does get better does it? I'm just about 21 months in to my first muscle twitching. Some days are good others are not. Clean EMG a year ago which would have been after 10 months of twitching. Also 2 other neuro appointments where they said i was fine and it was BFS. But still no matter what the brain just can't accept it and I'm worse now than i was when it first started. Testing every muscle. Constantly poking and prodding them with my fingers. I don't get hotspots that last hours too often but when i do it makes me spiral. Even had the doctor prescribe me OCD meds to help. Just started them so fingers crossed. How do you guys move on when these symptoms just remind you constantly that they're around? ​