Benign fasciculation syndrome (BFS)

Reading this thread has been very comforting to me, so I made an account and I'm going to pitch in with my experience. 32 year old woman here.

Towards the end of June (about 2.5 months ago) I began experiencing a sensation that felt like pressure was being applied to my throat, with no discernible cause. I became increasingly unsettled by this sporadic feeling, which would sometimes last for hours. I had a thyroid ultrasound (7/15) which came up with basically nothing (I have two benign nodules just hanging out in there) and an endoscopy (8/14) and barium swallow test (8/25) which were both clear. The sensation largely went away on its own, unexplained, toward the end of July (tests felt unnecessary since symptoms were over).

However, on August 2nd, I had what I believe to be a panic attack that awakened me from sleep around 1:30 in the morning. I have a long history of anxiety/depression, but I've never had a full panic attack. This consisted of about... 5-10 minutes of elevated heart rate, uncontrollable full-body shaking, and a consuming thought that my death was imminent.

After this happened, I became unable to sleep. My appetite plummeted (VERY unusual for me) and I've lost somewhere around 17 lbs. I'd be overcome by extreme anxiety any time I tried to sleep, and I started developing muscle aches in my limbs.

Two weeks or so into the sleep deprivation (which was severe enough that I started hallucinating a little at night after not sleeping at all for several days on end) I began experiencing muscle twitches. The twitching started in my left calf and spread to the thigh and foot, and then the right leg and right arm started getting twitchy. I also had (well, have) some numbness.

I immediately became terrified that I could have ALS and managed to get in to see a neurologist on 8/22. She did the standard neuro tests (which came back normal), ordered some bloodwork (also normal) and gave me a script to get a brain MRI with and without contrast, and an EMG, but she assured me that she did not think I had a serious neurological issue.

I got the MRI done on 8/28 and recently the results came back clear. I did the EMG/NCV on 9/1 and it also returned clear. I am somewhat frustrated that the muscle twitching wasn't happening during the EMG/NCV, because I feel like it would've picked up something, but the doctor assured me that there was no evidence of muscle deterioration indicated. However, there was no evidence of ANYTHING, and all the negative tests have been the opposite of reassuring. I felt like the doctors should’ve at least discovered a pinched nerve or something, since my limbs have been feeling so weird and thobby and numb.

The muscle twitching has been by far the most disturbing symptom, though, and has been preventing me from sleeping. I took a video of it to prove it, and I’ve generally been obsessing over how to explain the sensation to others. My family and friends generally believe that my anxiety has caused this, an opinion that sometimes angers me and sometimes comforts me.

There is a lot I didn't know about the medical realm, and unfortunately I have been panic-googling a lot. Like, the average person doesn't know the difference between a fasciculation and a spasm, but I sure as hell do now. I know, objectively, that it would be very statistically unlikely for myself (a 32 year old woman with no family history of neurological disorders) to develop ALS, but it is scary and not IMPOSSIBLE, and muscle twitching is such a hallmark of the disease. Learning that my body could just be doing all this weird stuff (BFS) without that same weird stuff actively working to kill me (ALS) has been a real relief, and hopefully reduces my anxiety for the near future.

My PCP is in communication with my neurologist, and they are going to look into any other testing that could be done, but honestly, I think it is a bit of a waiting game. If I'm markedly disabled in the near future, I have ALS. If I am not, I have BFS. And the latter is far more likely.

I guess I do have a question for anyone else reading this - does anyone else have numbness / soreness occasionally alongside the twitching?

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Reading this thread has been very comforting to me, so I made an account and I'm going to pitch in with my experience. 32 year old woman here.

Towards the end of June (about 2.5 months ago) I began experiencing a sensation that felt like pressure was being applied to my throat, with no discernible cause. I became increasingly unsettled by this sporadic feeling, which would sometimes last for hours. I had a thyroid ultrasound (7/15) which came up with basically nothing (I have two benign nodules just hanging out in there) and an endoscopy (8/14) and barium swallow test (8/25) which were both clear. The sensation largely went away on its own, unexplained, toward the end of July (tests felt unnecessary since symptoms were over).

However, on August 2nd, I had what I believe to be a panic attack that awakened me from sleep around 1:30 in the morning. I have a long history of anxiety/depression, but I've never had a full panic attack. This consisted of about... 5-10 minutes of elevated heart rate, uncontrollable full-body shaking, and a consuming thought that my death was imminent.

After this happened, I became unable to sleep. My appetite plummeted (VERY unusual for me) and I've lost somewhere around 17 lbs. I'd be overcome by extreme anxiety any time I tried to sleep, and I started developing muscle aches in my limbs.

Two weeks or so into the sleep deprivation (which was severe enough that I started hallucinating a little at night after not sleeping at all for several days on end) I began experiencing muscle twitches. The twitching started in my left calf and spread to the thigh and foot, and then the right leg and right arm started getting twitchy. I also had (well, have) some numbness.

I immediately became terrified that I could have ALS and managed to get in to see a neurologist on 8/22. She did the standard neuro tests (which came back normal), ordered some bloodwork (also normal) and gave me a script to get a brain MRI with and without contrast, and an EMG, but she assured me that she did not think I had a serious neurological issue.

I got the MRI done on 8/28 and recently the results came back clear. I did the EMG/NCV on 9/1 and it also returned clear. I am somewhat frustrated that the muscle twitching wasn't happening during the EMG/NCV, because I feel like it would've picked up something, but the doctor assured me that there was no evidence of muscle deterioration indicated. However, there was no evidence of ANYTHING, and all the negative tests have been the opposite of reassuring. I felt like the doctors should’ve at least discovered a pinched nerve or something, since my limbs have been feeling so weird and thobby and numb.

The muscle twitching has been by far the most disturbing symptom, though, and has been preventing me from sleeping. I took a video of it to prove it, and I’ve generally been obsessing over how to explain the sensation to others. My family and friends generally believe that my anxiety has caused this, an opinion that sometimes angers me and sometimes comforts me.

There is a lot I didn't know about the medical realm, and unfortunately I have been panic-googling a lot. Like, the average person doesn't know the difference between a fasciculation and a spasm, but I sure as hell do now. I know, objectively, that it would be very statistically unlikely for myself (a 32 year old woman with no family history of neurological disorders) to develop ALS, but it is scary and not IMPOSSIBLE, and muscle twitching is such a hallmark of the disease. Learning that my body could just be doing all this weird stuff (BFS) without that same weird stuff actively working to kill me (ALS) has been a real relief, and hopefully reduces my anxiety for the near future.

My PCP is in communication with my neurologist, and they are going to look into any other testing that could be done, but honestly, I think it is a bit of a waiting game. If I'm markedly disabled in the near future, I have ALS. If I am not, I have BFS. And the latter is far more likely.

I guess I do have a question for anyone else reading this - does anyone else have numbness / soreness occasionally alongside the twitching?

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@anxiousordying you’ve got to quit building this stuff up in your head or you will kill yourself from stress. I was in the same boat. For roughly two years I had severe muscle twitching, some soreness in various muscles and numbness that would come and go. I thought I had ALS and nobody could tell me otherwise. Eventually I was cleared by an EMG through my neurologist and everything except the twitching went away. I still twitch 24/7 but I’m learning to deal with it. My anxiety was so bad before my results that I had a couple of ALS symptoms including slurred speech and some tripping over myself because my equilibrium was all off. After the EMG cleared me of ALS, 95% of my symptoms disappeared with the stress except for the twitching. Please do me a favor and talk to a therapist as I did because the stress you’re dealing with WILL kill you. If your neurologist says you don’t have ALS then please believe him/her. They have endured years of schooling to determine this type of stuff. I hope this helps you in some way.

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@anxiousordying you’ve got to quit building this stuff up in your head or you will kill yourself from stress. I was in the same boat. For roughly two years I had severe muscle twitching, some soreness in various muscles and numbness that would come and go. I thought I had ALS and nobody could tell me otherwise. Eventually I was cleared by an EMG through my neurologist and everything except the twitching went away. I still twitch 24/7 but I’m learning to deal with it. My anxiety was so bad before my results that I had a couple of ALS symptoms including slurred speech and some tripping over myself because my equilibrium was all off. After the EMG cleared me of ALS, 95% of my symptoms disappeared with the stress except for the twitching. Please do me a favor and talk to a therapist as I did because the stress you’re dealing with WILL kill you. If your neurologist says you don’t have ALS then please believe him/her. They have endured years of schooling to determine this type of stuff. I hope this helps you in some way.

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I am indeed going to therapy (I've been a therapy regular since I was a teenager) and I've upped my therapy from every other week to weekly since all of this started. My psychiatrist recommended that I enroll in an intensive outpatient therapy program if I don't get a handle on this soon. Unfortunately, I wasn't particularly reassured by the EMG even though I know it is an important diagnostic tool and, due to my already not fitting into the typical demographics for ALS, a clear EMG would make ALS extra unlikely. It is so hard to disentangle anxiety/stress/insomnia/depression symptoms from physical conditions. Believe me, I know the stress will kill me!! I'm a lifelong overthinker and neurotic. I have convinced myself that the intermittent numbness I've been experiencing, mostly in my legs/feet (but also weirdly in my pinky finger - which I think probably originates because of poor posture/leaning on my elbow too much), is a sign of increased muscle weakness, but yesterday I forced myself to go outside and take several walks, and aside from fatigue and a ton of twitching, I didn't notice any increased muscle pain resulting from the exercise that would indicate loss of muscle. I think I've just got to keep doing activities that prove this wrong.

Another thing: I was also experiencing an extremely unpleasant tightness/gripping sensation in my ribcage/chest, most often at night when trying to sleep, and a thrumming/vibrating feeling under my skin. This, to me, was initially another sign that Something Terrible was going on, but now I'm thinking that it was probably just a panic or anxiety attack, especially since it has not happened to me for the past two days after I learned that there could be an explanation for my symptoms that isn't fatal (BFS). I agree with you that the anxiety has to be addressed and expelled in order to regain a realistic view of what's going on with one's body. It is astonishing that this can just happen to people without any identifiable cause, and without an underlying serious condition.

It is great to hear that your symptoms have almost entirely disappeared! Obviously, if I start feeling worse, I will reconnect with my neurologist (and I will update here), but in the meantime, I am going to focus on improving my mental health and overall quality of life. All of the obsessive researching I've been doing is sometimes detrimental and sometimes beneficial--one of the positive things I've learned is that apparently, it is pretty unusual for ALS patients to initially present with fasciculations as their initial complaint, and they often don't even notice them.

Thank you so much for your reply. It was helpful for sure. It is good to have somewhere to talk about this, because I am driving my family and friends bonkers.

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I am indeed going to therapy (I've been a therapy regular since I was a teenager) and I've upped my therapy from every other week to weekly since all of this started. My psychiatrist recommended that I enroll in an intensive outpatient therapy program if I don't get a handle on this soon. Unfortunately, I wasn't particularly reassured by the EMG even though I know it is an important diagnostic tool and, due to my already not fitting into the typical demographics for ALS, a clear EMG would make ALS extra unlikely. It is so hard to disentangle anxiety/stress/insomnia/depression symptoms from physical conditions. Believe me, I know the stress will kill me!! I'm a lifelong overthinker and neurotic. I have convinced myself that the intermittent numbness I've been experiencing, mostly in my legs/feet (but also weirdly in my pinky finger - which I think probably originates because of poor posture/leaning on my elbow too much), is a sign of increased muscle weakness, but yesterday I forced myself to go outside and take several walks, and aside from fatigue and a ton of twitching, I didn't notice any increased muscle pain resulting from the exercise that would indicate loss of muscle. I think I've just got to keep doing activities that prove this wrong.

Another thing: I was also experiencing an extremely unpleasant tightness/gripping sensation in my ribcage/chest, most often at night when trying to sleep, and a thrumming/vibrating feeling under my skin. This, to me, was initially another sign that Something Terrible was going on, but now I'm thinking that it was probably just a panic or anxiety attack, especially since it has not happened to me for the past two days after I learned that there could be an explanation for my symptoms that isn't fatal (BFS). I agree with you that the anxiety has to be addressed and expelled in order to regain a realistic view of what's going on with one's body. It is astonishing that this can just happen to people without any identifiable cause, and without an underlying serious condition.

It is great to hear that your symptoms have almost entirely disappeared! Obviously, if I start feeling worse, I will reconnect with my neurologist (and I will update here), but in the meantime, I am going to focus on improving my mental health and overall quality of life. All of the obsessive researching I've been doing is sometimes detrimental and sometimes beneficial--one of the positive things I've learned is that apparently, it is pretty unusual for ALS patients to initially present with fasciculations as their initial complaint, and they often don't even notice them.

Thank you so much for your reply. It was helpful for sure. It is good to have somewhere to talk about this, because I am driving my family and friends bonkers.

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Hi @anxiousordying
I read both of your posts. First, let me tell you I've had all the neurological symptoms you have with numbness, pain, massive fasciculations mostly in my legs/feet, especially calves, but sometimes face/eyelids or somewhere else. Numbness issues started in my teens, fasciculations in my 20s and pain issues increased over time. Restless leg syndrome too. I also get the internal vibrations a lot especially upon waking. The good news is I'm 64 and still here!!! Woohoo! None of those things will be the cause of my demise.

8 years ago I suddenly began aspirating all my food. Issues controlling food and swallowing. Muscle fatigue issues during eating process and other areas. I was sure I had ALS. That was not a fun scare so I feel for you on that. We all jump to the worst case scenario. ALS is rare -- only 4-6 people in 100,000 so be very hopeful because it's unlikely to be the cause of your issues.

It just so happens, I already knew I had a rare hereditary neurological disorder (as does my son) called Hereditary Neuropathy with Pressure Palsies (HNPP). Not enough info/data available since it's rare, but nothing on related swallowing issues. Two neurologists worked together to rule out ALS, MS, MG and in the end both determined my swallowing issues are part of my progressive HNPP. HNPP is not considered a lethal disorder, but it sure can be challenging for those of us with the most severe cases. I have a lot of pain in my legs and RLS when I sit in the recliner or lie in bed because of the pressure palsies. Can't wear any pants tight on my calves or I'll get RLS instantly. Anything sounding like your triggers/issues?

What is interesting is that you said your pinky goes numb when you lean on your elbow. That's the kind of thing that happens with HNPP due to the Pressure Palsies part. Do your fingers go numb for a month when you use scissors too much? Carry heavy plastic grocery bags? Do your toes go numb for a month when you wear pumps? Arm start tingling and go to sleep if you hold the phone up to your ear very long? All signs of HNPP. I once sat on a kayak for an hour and when I went to get out, both legs were asleep -- surprise -- the guys had to carry me to the dock. How embarrassing. Talk about painful pins and needles as they came back to life in about 15 minutes. Novacaine injection and my face stayed numb for 9 months because nerves get damaged easily. My son banged both elbows in a fall and had to have nerve transposition surgery (a big deal) on both arms to stop the constant pain and regain use of his last two fingers on both hands. My feet have been numb for years. Only about 16 people in 100,000 have HNPP. It can be diagnosed through a genetic test. Just throwing it out there as another possibility.

One other interesting thing. Earlier tonight, I was in my recliner and fell asleep for a moment and woke up with a gasp because I have sleep apnea and had stopped breathing. I just happened to be checking my oxygen level when I felt asleep (non-related lung issues) and it dipped to 88% when that happened instead of the usual 91-93%. A few minutes later my calves just started going crazy with fasiculations in about 100 different spots. I didn't know sleep apnea is a trigger until now. For me, chocolate is also a trigger, most likely caffeine. That's the only caffeine I ingest and it doesn't take much to cause fasciculations, RLS and muscle cramps. Mentioning all this to see if anything hits home with you.

I just googled and some triggers for twitching are sleep apnea, sleep deprivation, caffeine, vitamin D deficiency, dehydration and stress. And, of course some neurological disorders like HNPP or BFS and maybe others. Do you think you may have some of the more common triggers? Some are easy fixes.

I'm wondering when you were sleeping and woke up with the panic attack if you had maybe stopped breathing momentarily from sleep apnea??? That does wake you up constantly. My nightmares are also worse when sleeping on my back (bad position for sleep apnea). You can do a sleep study if you think you have sleep apnea. Has anyone ever told you that you snore, breathe weird or stop breathing while sleeping?

Know that my EMG/NCS results are not normal starting at 21 when I first had those tests, but again, it's from HNPP not ALS. Phew! I hope my story helps relieve some of your stress about having ALS. Good luck to you and keep us posted! You're in my prayers. 🙂

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Hi @anxiousordying
I read both of your posts. First, let me tell you I've had all the neurological symptoms you have with numbness, pain, massive fasciculations mostly in my legs/feet, especially calves, but sometimes face/eyelids or somewhere else. Numbness issues started in my teens, fasciculations in my 20s and pain issues increased over time. Restless leg syndrome too. I also get the internal vibrations a lot especially upon waking. The good news is I'm 64 and still here!!! Woohoo! None of those things will be the cause of my demise.

8 years ago I suddenly began aspirating all my food. Issues controlling food and swallowing. Muscle fatigue issues during eating process and other areas. I was sure I had ALS. That was not a fun scare so I feel for you on that. We all jump to the worst case scenario. ALS is rare -- only 4-6 people in 100,000 so be very hopeful because it's unlikely to be the cause of your issues.

It just so happens, I already knew I had a rare hereditary neurological disorder (as does my son) called Hereditary Neuropathy with Pressure Palsies (HNPP). Not enough info/data available since it's rare, but nothing on related swallowing issues. Two neurologists worked together to rule out ALS, MS, MG and in the end both determined my swallowing issues are part of my progressive HNPP. HNPP is not considered a lethal disorder, but it sure can be challenging for those of us with the most severe cases. I have a lot of pain in my legs and RLS when I sit in the recliner or lie in bed because of the pressure palsies. Can't wear any pants tight on my calves or I'll get RLS instantly. Anything sounding like your triggers/issues?

What is interesting is that you said your pinky goes numb when you lean on your elbow. That's the kind of thing that happens with HNPP due to the Pressure Palsies part. Do your fingers go numb for a month when you use scissors too much? Carry heavy plastic grocery bags? Do your toes go numb for a month when you wear pumps? Arm start tingling and go to sleep if you hold the phone up to your ear very long? All signs of HNPP. I once sat on a kayak for an hour and when I went to get out, both legs were asleep -- surprise -- the guys had to carry me to the dock. How embarrassing. Talk about painful pins and needles as they came back to life in about 15 minutes. Novacaine injection and my face stayed numb for 9 months because nerves get damaged easily. My son banged both elbows in a fall and had to have nerve transposition surgery (a big deal) on both arms to stop the constant pain and regain use of his last two fingers on both hands. My feet have been numb for years. Only about 16 people in 100,000 have HNPP. It can be diagnosed through a genetic test. Just throwing it out there as another possibility.

One other interesting thing. Earlier tonight, I was in my recliner and fell asleep for a moment and woke up with a gasp because I have sleep apnea and had stopped breathing. I just happened to be checking my oxygen level when I felt asleep (non-related lung issues) and it dipped to 88% when that happened instead of the usual 91-93%. A few minutes later my calves just started going crazy with fasiculations in about 100 different spots. I didn't know sleep apnea is a trigger until now. For me, chocolate is also a trigger, most likely caffeine. That's the only caffeine I ingest and it doesn't take much to cause fasciculations, RLS and muscle cramps. Mentioning all this to see if anything hits home with you.

I just googled and some triggers for twitching are sleep apnea, sleep deprivation, caffeine, vitamin D deficiency, dehydration and stress. And, of course some neurological disorders like HNPP or BFS and maybe others. Do you think you may have some of the more common triggers? Some are easy fixes.

I'm wondering when you were sleeping and woke up with the panic attack if you had maybe stopped breathing momentarily from sleep apnea??? That does wake you up constantly. My nightmares are also worse when sleeping on my back (bad position for sleep apnea). You can do a sleep study if you think you have sleep apnea. Has anyone ever told you that you snore, breathe weird or stop breathing while sleeping?

Know that my EMG/NCS results are not normal starting at 21 when I first had those tests, but again, it's from HNPP not ALS. Phew! I hope my story helps relieve some of your stress about having ALS. Good luck to you and keep us posted! You're in my prayers. 🙂

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I am experiencing this same thing. I can’t sleep at night. I went for an emg and the neurologist diagnosed me with benign muscular fasciculation and told me to try Xanax. I refuse to take Xanax as the answer. I’d like to know what’s causing my involuntary twitching. I have tried supplementing with calcium, magnesium, and vitamin D. I tried tonic water from the advice of my naturopath. I’ve cut back on caffeine and nothing seems to be working. Please help!

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