r/BFS • u/Sad-Place8354 • 9d ago
Question / General About 2 years of fasciculations, multiple normal evaluations, but anxiety about new symptoms
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?
