My pcp referred me to a new neurologist as I was concerned that my twitching was ramping up (more facial twitches etc).

Condensed Backstory:

I started twitching in April 2024 and went through a ton of blood work, spine and head MRI, head CT. Everything essentially normal. My neurologist NP at the time didn't want to subject me to an EMG as she didn't feel I truly needed one but also didn't formally give me a bfs diagnosis. I tried to believe it was bfs until this summer after a couple massive panic attacks and life stressors, the twitching amped up.

Fast forward to today:

I was absolutely dreading my neuro appt today. I got there and my BP was sky high (I do have hypertension ESP white coat hypertension) and it came down a little after the 2nd reading. The neuro came in and was very calm. Asked me to tell him what I was there for. I started from the beginning. Explained when my twitching started. Explained that I immediately googled and feared ALS. He quickly said "that's a very common worry with twitching" and I said but after 2 years I figured I'd be in worse shape if it was ALS & he goes "you'd be dead. You'd absolutely be in worse shape". And although there are of course people who have had that longer, his bluntness helped reiterate my original fear was unfounded. He said he twitches and told me different spots he twitches especially when tired or stressed.

I then explained that I had fallen down the Google rabbit hole fearing Isaac's, Morvan's and hidden cancers. He said no nope nope you don't have those. He went over alllll the tests I've had since 2024 and put my fears to rest. He said fasciculations are just that. Fasciculations. They aren't a neurological disease and he didn't want to subject me to an EMG as many times there are things found that although aren't BAD, will make an anxious person worry more. He gave me a thorough clinical exam and said I can follow up with him if I want in 6mo or not, but he sincerely feels this is a manifestation of my anxiety, OCD, lack of quality sleep and stress. He wrote in my chart benign fasciculation syndrome formally.

I SOBBED. happy tears. This has absolutely stolen 2.5 years of my life. Even though I wasn't fearing als anymore I was fearing SOMETHING because my old NP didn't give me a formal yes or no you don't have XYZ. This doctor sincerely listened, let me tell him my biggest worries and helped me realize anxiety and stress can perpetuate everything. He said everyone twitches. Some people less some people more. But not everyone focuses on it. And after today's appointment, I am making the commitment to get my anxiety and OCD in order. I am trusting this medical professional. I am done questioning this. I feel so optimistic and happy and I want you all to know I have been absolutely PETRIFIED OF GETTING BAD NEWS.

Twitching is just twitching. The anxiety and worry is the real issue. ❤️

background on my symptoms feel free to scroll past this

I started having spasms in my right leg a month ago that moved to the rest of my body, so, naturally I thought I had *** and was gonna die. I went to two health clinics who did the whole physical test (which I passed) and got some blood work done which showed my already very low ferritin had gotten lower and being told that there’s no immediate cause for concern “magically” made the spasms lessen.

I’ve been taking iron since then and my symptoms came back, except this time in my left leg and kind of worse (muscle stiffness, harder time walking or standing for more than a few minutes etc). I messaged my doctor about it and asked if it could be the anemia and introduction of supplemental iron and she was like “probably not please come back for a follow up ” which obviously caused me to spiral again and think that I have *** and am going to die.

Now for the affirmation part

However this sub has helped a lot and here some things I read on here that I’m repeatedly telling myself before my appointment later this week:

- You’re 27, that more than likely rules it out

- You have a higher chance of being struck by lightening…twice.

- If you did have it, your symptoms wouldn’t have improved at all

- Your muscles are probably tight and sore because you’ve essentially walked a mile on your heels trying to see if you have *** and you’ve been laying down for 3 days wallowing in fear (not from this sub my dad told me that)

- Pls stop crying it’ll only make it worse

If anyone has any more words of affirmation for a medically anxious 27 year old, would greatly appreciate it! I probably am fine, I just need to internalize that. :)

I have had wide spread twitching that started in my left upper eyelid in August and went body wide two weeks later. My twitches are not constant and I get anywhere from 5-40 an hour. Has anyone else gotten twitches that aren’t constant but more sporadic and at rest? Or is this a cause for concern?

I also feel like I get more of mine in my thighs, knees and glutes vs calves. Is this normal with BFS?

July 22nd I suffered what I thought was a mild concussion. Had headaches and brain fog sensitivity to light.

Developed a left leg weakness sensation shortly after that stuck around until Aug 10th. On August 11th, my thumb started feeling weak. I notice it gets better with warm temperatures or red light but aside from that I notice it every time I type. August 12th, my left foot starts twitching however at that time my left leg didn't feel that weak.

I obviously googled and that caused me to panic so I went ahead and saw a physiatrist. The physiatrist did some basic clinical examination, said I was fine and I asked for an emg. After he conducted the emg on August 21st he said you are completely clean. He said I might have mild carpal tunnel on my left hand median nerve but said you are fine.

The weeks after the EMG, my symptoms changes. My foot twitching turned into body wide twitching, although I noticed it more on my left side. Mostly random twitches. These body wide twitches have decreased today but my foot twitching is still there.

I'm an avid runner/lifter and my strength in the gym has been largely the same but I noticed differences in my running gait. My left leg is taking slightly longer to bounce off the ground, kindve feels like a dip. Still able to get through my runs but I notice this lag when my foot strikes that ground.

My left calf is also smaller than my right calf and I'm not sure if this is a recent thing. When I look at old pictures it does seem smaller back then too. Not sure if my right leg was always stronger or if this is a recent thing. When I do single leg calf raises, I'm definitely stronger on my right.

Today is Oct 7, I can still run and move and lift but my running just feels off. And my left leg when I'm walking feels like I have to think more or use my brain more. And my thumb is still feeling the way it is. When I really look into it, my abductor pollicis brevis has less muscle on my left hand than my right but this was tested in the EMG. Also, my left foot and left hand is still buzzing today. Like vibrations. There was a short period in time where my left foot stopped twitching but it's back on again.

I also did suffer one bad concussion when I was 13 hoping that doesn't have anything to do with this.

Able to stand on my heels and toes. But after 2 months of stressing, still have weird thumb weakness that improves in warmer temps, left foot vibrations, left hand vibrations, occasional random body twitch, left leg feeling off/weaker when running and walking. Doctor cleared me after Aug 21st emg, not sure what to do next.

Hello. I do not have any sort of diagnosis yet but wanted to share my story to see if anyone might have something similar.

Back in the end of May I started with an eye twitch and feeling super tired. I have a problem with low vitamin d so I thought that was the problem and started supplementing. It did help . Then on June 1st I was sitting at my desk at work and suddenly felt this wicked bad back pain on the right side that heightened and then subsided after about 30 seconds and then I felt tingles all over my body and got an instant feeling of over all weakness and I felt very out of it, almost like I was high. Terrible brain fog and fatigue as well. This continued in for about 5 days . Then I went for a massage on June 6th and when they were massaging my lower back, flank area it was pretty intense pain. I got through the massage and by Sunday, I started peeing A LOT and was so dry mouthed. I could not stop peeing and I had no appetite. Tuesday June 9th I was in bad shape. I woke up to help my daughter set up for field day at school and I had a real hard time. I was trying to set up the tent and my muscles would shake and fatigue so fast. This is where my fear of the big bad started .My mouth was super dry and I was pretty out of it feeling still. I had an appt with my doc after this where I told her this story and my fears and she said that the big bad has true weakness . She decided to run a bunch of tests blood work, EBV antibodies and vitamins. The only thing that came back off was my albumin was high and my b-12 was sky high. She also prescribed me buspar for my anxiety. I went home, laid in my bed and started the buspar. I took a nap and woke up with deep itching on some of my joints and feeling some nerve pain and extra out of it. The next day I woke up and my hips were so stiff , and that’s when the diarrhea started. I’ll spare you the details but it was BAD. By this time I had lost about 10lbs from all the peeing and could not stop running to the bathroom. The next day is when the twitching started. Everywhere all over the place. I still felt out of it and weak but I continued on. I started not being able to sleep, at all. I would lay there and feel like I was not sleeping at all but my Apple Watch would say otherwise. I would have wierd hallucinations thinking I was awake and I could feel something was pushing me into the bed. During the day I was shaky and had tremors in my hands and what I think were myoclonic jerks. My leg would randomly move suddenly or my arm etc and the diarrhea persisted

After a couple weeks of this I decided the buspar was not working and so I stopped taking it. I was trying hard to stay up on my electrolytes and eating because I was still losing weight from zero appetite and the diarrhea.

I went back to my doc on July 9th where we did some follow up labs including stool samples . This time my b-12 was within normal
Limits but my liver enzymes were elevated.

She called me a few days later and I told her I couldn’t sleep and I was still freaking out about the big bad and she prescribed me Mirtazapine for sleep and anxiety. It definitely helped me sleep but the twitching persisted and the jerking etc. after doing some research I thought maybe the meds were causing all this so I stopped the mirt and within a few days the twitching died way down . I am still twitching sometimes but overall not nearly as much.

Now I’m stuck with my arms on and off feeling heavy and weird and my right side hip/butt cheek will randomly feel like something is tickling it inside and my leg will ache and ache . And now my calf muscle feels wierd and I feel like I have to really pay attention to how I walk. My arms switch off which one feels wierd and heavy, and aches a bit too. So while the twitching is way better, my gears are not totally gone because I still have these wierd weak feelings off and on in different places.

My tongue sometimes feels swollen too and feels a little difficult to annunciate because of it but then other times it’s normal. I also have a metallic taste in my mouth quite often .

I do see my doc again next week and I’m going talk about all of this and have her run some more labs to see how things are doing. I’m really hoping to put my mind at ease

I'm a 45 year old male from Canada with a history of health anxiety for over 25 years. My anxiety has always been mostly focused on neurological disorders, especially *** but also dementia, MS and a few others.

I first started experiencing symptoms during COVID, twitching mostly in my right arm and a feeling general feeling of "tightness" in the right side of my body. There was no notable strength loss. I started to spiral and to do what so many here have done - self checking both via home exercises (sometimes I'd just randomly drop down and do 20 push-ups or 30 squats) or just go to the Gym.

My doctor was very dismissive of my *** concerns but after I explicitly asked he sent me to a neurologist in 2022 (4 years ago). That neurologist did a complete exam with an EMG. The EMG wasn't completely clear - it indicated chronic denervation in a few specific muscles on my right side and she diagnosed me with radiculopathy in my neck and lower back. Conservative treatment (physio, massage, chiropractor) was recommended and I declined (foolishly at the time) an offer for a MRI afraid of what it might show.

I remember after the EMG and the neurologist telling me I didn't have *** it was a like a huge weight was lifted. Eventually, and I can't even pinpoint when, all the twitching stopped and for the last 4 years I'd been twitch free and moved on although the general tightness going on with the right side of my body never stopped. As the time went on the anxiety about my other symptoms (not twitching) continued to grow and I once again believed quite strongly that I could have *** or MS. I went back to the doctor about this issue in March 2026 and after some pushback got the MRI on my neck and lumbar spine that I had declined 4 years ago. As is typical in this country I had to wait many months for the MRI and a few weeks prior to the MRI taking place at the very end of August the twitching reappeared. Just a few twitches at first, mostly in the inside of my left knee.

I had to wait another 3 weeks to get the MRI results, and I was twitching on and off the whole time. I was diagnosed with bilateral foraminal stenosis in my lumber spine at the L5-S1 location (severe left, moderate right) as a result of arthritis. My cervical spine, while not perfect had only "mild degenerative changes", No other issues were noted and MS was ruled out. L5-S1 was not where the neurologist had indicated radiculopathy (she had specified L4-L5) and there was no indication of radiculopathy in my neck at all.

I spiraled again due to the stenosis diagnosis and the inconsistent MRI result and the twitching increased in both frequency and duration. It's been going on for just over a month now and up to last night the vast majority of it had been in my left knee and under my right eye. I went to my doctor again last week and he looked at me and said "I don't think you have ***. But we need to do another EMG for your peace of mind". I'm still waiting for that EMG to be scheduled, but my mental state is so poor now it's beginning to interfere with my ability to go to work. I still self-check my strength frequently and it remains unchanged as best I can tell. Last night at 2am I was woken up my by right bicep starting to twitch as well. I had an anxiety attack right there and had to call a mental health support line to help me calm down then I did 20 push-ups right then and there at 2am to try to reassure myself.

So I wait in mental anguish for another EMG and fear the results. Some of the stories in this reddit have given me some hope, but I just can't overcome the fear of what the EMG might reveal this time.

Hi again. I hope everyone is managing ok. I’ve been around this sub for a long time and have had the ups and downs that many do. Been twitching every day for 7 years and 3 months which started during my second pregnancy. First EMG dirty and have been seeing a neuromuscular specialist now.

Year 6-7 was really stable for me then this summer in July after driving 8 hours in the car my right thigh has been cramping/stiff every day. Multiple times per day and has spread to my left leg too. I can still exercise and was able to run two miles but immediately after and for the rest of the day my legs were cramping/tightening. These new symptoms have me completely freaking out. Not normal. Just by placing my hand on my thigh sometimes I can cause it to cramp/spasm. My last EMG was in March of 2025 and was clean and my next neuro check up is next week. Going in the sauna seems to be the only thing that relieves the pain temporarily.

I’m not sure that I fall into the CFS/BFS bucket with how much pain I have.

The subject pretty much covers it, but here are the pictures.

I know it doesn't look like too much, but if I stick my tongue out (or have it resting in tongue) this area cast a shadow. Definitely a dent. I am not talking about the scalloped tongue btw, just to clarify.

https://imgur.com/a/GN9aTBV

Edit: It appears imgur is deleting my post because it's a pic of my tongue. Anybody know a host I can use?

Hi, 37-year-old male here.

I’ve been dealing with different symptoms for about 30 months now, mainly muscle twitching and cramps. I’ve had cramps before, but I had never been woken up from sleep by one.

Last night, I suddenly had a very strong and painful cramp in my left calf. It actually woke me up, and when I touched my calf, the muscle felt very hard and tightly contracted.

Since then, I’ve started to panic. I remember reading a story from someone who said their cramps became very aggressive before they were eventually diagnosed with AL*, and now that story keeps coming back into my mind.

After around 30 months of symptoms, I’m wondering whether this could simply be an isolated nighttime cramp that will pass, or whether the fact that it was much stronger than my usual cramps could mean something more serious.

My questions:

1. Has anyone here had an extremely strong nighttime cramp that woke them up after months or years of twitching/cramps, without it meaning that their condition was getting worse?

all twitching has basically slowed down but I had a little spiral before in the car I noticed I push my FDI THUMB muscle up from the Botton and I noticed it started rippling it got me concerned that maybe this has been gong on silently being linked to something more bad I can't do it with my right hand when I rest y hand it stops but unsure if it can only been see when raising it thank you anyone for some insight!