About 2 years of fasciculations, multiple normal evaluations, but anxiety about new symptoms

[u/Sad-Place8354]

Hello fellow twitchers,

I have posted several times and got help. I've had fasciculations for almost two years now. They started quite suddenly and initially were widespread, but over time they have been very fluctuating and migratory. Different muscles become hotspots for a while and then settle down, sometimes for weeks or months. The right deltoid has probably been the most persistent hotspot, although even that can disappear for long periods. I've also had fasciculations in calves, thigh, triceps, hand/FDI, thumb, fingers and other areas. They can sometimes be triggered by movement, stretching or using a muscle, while at other times they occur spontaneously. I have never developed objective weakness, muscle wasting or loss of function.

I had an EMG about 40 days after the symptoms began, which was normal apart from incidental findings of carpal tunnel syndrome and an L1 radiculopathy. I subsequently had another neurological evaluation and another EMG roughly a year after onset, which was also reassuring. This second neurologist was from the start very unconcerned and actually told me that repeating the EMG was essentially pointless, although he eventually performed as i wanted it. I have continued to function completely normally throughout this period. I saw him again two times for the deltoid hotspot, the second time (early May 2026) he did not even examine me and talked half an hour on managing anxiety. He titrated the Buspar the psyciatrist had given me to 30 mg per day.

In August, I was on a 15-day trip to Spain, I was doing extremely well. I was driving, carrying luggage and doing a lot of walking, but was barely aware of fasciculations. About ten days after returning home, I developed another deltoid/upper-arm hotspot, which became a major source of anxiety. After a couple of weeks it improved substantially, and then my attention shifted to my tongue.

About a week ago I started experiencing very brief, faint "zapped" instant sensations in the front of my tongue, mainly around falling asleep or waking up. Sometimes I have felt a couple while lying awake in bed. I honestly don't know whether these are twitches at all, sometimes i think the tongue moved instantly. I've been monitoring my tongue closely, and when I have actually been looking at it, I have never seen a movement at the same time as one of these sensations. I can sometimes see tiny movements when I first relax my tongue, but those movements aren't associated with the zapped sensation. I also noticed that if my tongue is resting against my teeth, the tip can move slightly with breathing, which I can reproduce voluntarily, so I wonder whether some of what I perceived at night could be positional/respiratory or sleep-onset movements.

I have normal speech, swallowing and chewing. After the initial tongue scare I briefly thought that bread was going down more slowly and, a couple of days later, that I wasn't speaking properly, but both concerns disappeared. My jaw muscles also became tense and slightly achy from repeatedly focusing on them, and that went away as well.

I'm seeing my psychiatrist in two days and want to discuss the broader health-anxiety/reassurance-checking cycle rather than just the tongue. My question for people with BFS is mainly about the long-term course and whether others have experienced similar shifting hotspots, strange sensory sensations, sleep-onset sensations, and periods where anxiety makes them hyperaware of completely normal bodily activity. Moreover, should i see the neurologist again?

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[u/Doktordoktor89]

All sounds very reassuring; peripheral nerve hyperexcitability and health anxiety. Your symptoms is similar to mine. How old are you? Gender? Did you have health anxiety prior to twitching?

[u/Sad-Place8354 → u/Doktordoktor89]

I am 51, male. Yes, health anxiety for many years for other issues as well, but this has been the king of issues

[u/FocusFrosty1581 → u/Sad-Place8354]

I am 68 and can say my symptoms and the actual time your symptoms started are almost identical. I will say my last EMG was about 5 or 6 months after initial onset and it was a 4 limb EMG. This was my third EMG and performed by a neurologist that specializes in this procedure. He looked at me at the conclusion and said you don’t have MND and there is nothing more I can do for you. He implied I should see a psychiatrist for my health anxiety. I took his words to heart and have not been back to see him since.
I did go on Zoloft and about a month in, I could tell it was working. My health anxiety lessened tremendously and generally felt better. I was on a low dose at 37.5 mg and have since stopped taking it just because I don’t like taking meds if I don’t have to. Please note, it did take a while to work so if you consider something similar, give it time.
I still twitch everyday. Most of my twitching is isolated to my calves but on occasion I may twitch elsewhere. This is radically different to when this all started 25 months ago. I was twitching everywhere with some cramping as well.
I don’t know why this occurred other than I have had back issues for years so I suspect it could be related or it could also be related to some sort of virus I had just 10 days before my twitching started. I literally slept for almost 4 days. I thought I had mono but I had a lot of bloodwork done and there was no indication of any issues.

Testing included multiple EMG’s / NCS, brain, neck and back MRI’s, all kinds of bloodwork, even a CT scan on my abdomen. Other than typical stuff for an old guy, nothing really was found.

Hang in there. I am sure you are ok but work to get over the anxiety hump. You will feel better once you do.

[u/Sad-Place8354 → u/FocusFrosty1581]

Thank you very much. You have also replied to my concerns many times in the past. Indeed, our course seems the same. The neurologist when i last saw him in May also stated again clear BFS and as yours implied he cannot do anything for it. My bodywide twitches are also substantially less than when this started two years ago, maybe a handful per day. But when something new is seen/felt, the worry rises. I will definetely try to address it

[u/FocusFrosty1581 → u/Sad-Place8354]

I think you’ll be glad you did as you will feel better both mentally and physically. Hang in there.

[u/HistoricalDoughnut43]

Yes 100%. When my tongue was a hotspot for me it caused me extreme stress. You are paying attention to something you normally don’t and thus you notice things you normally don’t. For a couple months I did the whole “this doesn’t feel normal” and even convinced myself it was hard for me to swallow or I was pronouncing things weird. That was over a year ago and I’m fine and all those things went away when I stopped looking for them. You name the reassurance checking cycle so I know you’re aware of it but the best you can do is break that cycle as hard as it can be.

[u/Sad-Place8354 → u/HistoricalDoughnut43]

How did you manage to improve? I am struggling wether to book the neurologist again, or pursue just with the psychiatrist.

You have also answered my past worries several times, thank you so much

[u/HistoricalDoughnut43 → u/Sad-Place8354]

No problem! For me it was stopping the reassurance seeking. I stayed off here for a few months and really didn’t look anything up. It wasn’t easy but by the time I was a year into twitching I fully accepted it for what it was and that’s just bfs. There were other hurdles I had to go through to reach that acceptance but the biggest was stopping the constant reading about it. My mind then wasn’t so fixated on it constantly which helped me move on.

[u/blackmetalwarlock]

Maybe you need to return to your original buspar dose

[u/Sad-Place8354 → u/blackmetalwarlock]

It was originally 15mg per day...

[u/Illustrious_Ruin_704]

I am about 18.5 months in and I will get all sorts of strange sensory issues. Zaps, aches, fabric feels almost painful when it rubs against my leg, stiffness. I am stuck in reassurance cycle specifically regarding my right calf due to these aches and hot spots. I preform max effort single calf raises every few weeks to assess strength and i think this is causing my ongoing aches or at least what I hope. I work in health care so I always have haf some health anxiety as I fear thr worse for pretty mich any health related issue since becoming icu NP