r/MuscleTwitch

Tomorrow makes 100 straight days of 24/7 calf fasciculations! Anxiety comes and goes in waves but doing pretty good rn! My PCP did blood work and came back clean but didn’t recommend me see a neurologist so I have not seen one. My theory is either stress/anxiety related as mine started when I started a rotation in the hospital and I came down with a cold day one. My other theory is that I have had these for a while but just never noticed (I don’t know for sure). Anyone else have 24/7 twitches in both calves?

Hi friends, I’m super curious on how often, and where your hot spots are? Do they change frequently? How long has it been going on for you?

Thanks!

Hi all. Been twitching for two months now with the initial twitch’s being the worst and I believe caused by anxiety. Got blood work done and all labs are in normal range. Noticed them in my calves and moved up to arms, shoulders, quads, butt. They’ve calmed down quite a bit where I notice them maybe 20 times a day but they jump. Wonder if anyone else has dealt with this? There’s no other symptoms. Strength is great and I regularly run 8-10 miles a day six days a week and am even seeing improvements in my endurance over the past two months. Possible over exertion? PCP isnt concerned. Also any copes?

I think I got better for a month or so, but now suddenly everything is worse.
I still have those episodes when i can’t initiate my swallow, and I’m slurring on certain letters.
But my twitching became more localized. My face ( lips are quevering, chin is twitching when i swallow, entire face, forehead, bridge of nose, but what scares me more now is that if I move my lips or touch them they twitch for couple of seconds very fast and stop. if I open my mouth I twitch next to my nose, If I tap my chin i twitch there, and also mu feet and my thenar muscles both hands. Not the calves or any other muscles. My tongue when I protruding it is so bad exactly like a bag of worms but only when protruded and it stopes after 20 seconds at rest.
What’s happening? I again went online to read and information are contradictory. Some say point away from AlS some say no. Videos on Youtube and one study that i read says that is not good.
Why my twitching got localized to the bulbar area and why is happening when I tap the muscle?
I twitch in all not that usual places, like above the collarbone, under the chin in the throat, and trapezoid muscle, all well recorded to be involved in early ALS. Is not clonus is the actual muscle belly twitching after a tap. Im very worried. I start twitching a year ago first in my eye and then entire body. The issues with bulbar area started in February.
Anyone else like me?

Hi everyone,

I'm 26M and I've been dealing with a strange combination of neuromuscular symptoms for around 16–20 months. I'm trying to understand whether this could fit BFS/neuromuscular hyperexcitability or whether I should keep investigating a possible mild myopathy.

Symptoms:

- Widespread fasciculations, mainly at rest

- Muscle pain and a constant "post-workout soreness" feeling

- Variable muscle fatigue – e.g. sometimes my arm feels easily fatigued while scrolling on my phone, while on other days it's almost normal

- Internal body tremor

- Sometimes my whole body feels physically exhausted, including a feeling that my head/neck muscles are physically tired

- I sometimes feel more prone to muscle strains than I used to be

I also notice tremor/fasciculations when deliberately contracting muscles.

For example:

- If I open my mouth widely and then close it, I can immediately trigger fasciculations in my cheek.

- If I strongly open my mouth, I can feel my facial muscles trembling.

- I recently noticed my eyelids/facial muscles trembling while squinting in bright sunlight, although I still had full strength to keep my eyes partially closed.

- If I sit cross-legged, bend forward and hold my back in a rounded position, after a while my whole body starts shaking/trembling, including my trunk and limbs. It stops when I relax or change position.

Interestingly, heat and massage help a LOT. A massage gun or heating pad can significantly reduce the muscle pain/tension and make me feel much better for a while. I also sometimes feel better after warming up rather than worse.

Onset:

The symptoms started around age 25. They appeared around the time I was taking trazodone, although I don't know whether there is any connection.

Before this I was physically active and was going to the gym in 2023 without these problems.

I had Lyme disease in 2022, treated with antibiotics. I repeated Lyme testing twice recently and it was normal/negative.

Neurological examination:

- Normal strength on examination

- No obvious muscle atrophy

- Normal reflexes

- No clear progressive loss of function

The symptoms have been relatively stable for about 1.5–2 years.

Blood tests:

- CK – normal

- AST/ALT – normal

- Lactate – normal

- Other routine blood tests – normal

EMG:

My EMG showed mild myopathic changes. The report described:

"Features of an incomplete myogenic damage pattern"

There were shortened motor unit potential durations and slightly reduced size indices in two muscles of the right lower limb, with increased polyphasia. There were also mild nonspecific changes in the posterior deltoid.

However:

- electrical silence at rest

- no signs of acute muscle damage

- other parameters were largely within normal limits

- doctors considered the abnormalities mild

WES:

I had Whole Exome Plus testing through Blueprint Genetics.

The only potentially relevant finding was:

COL12A1 c.7657T>C, p.(Tyr2553His), heterozygous

It was classified as a VUS (Variant of Uncertain Significance).

The variant is absent from gnomAD and some in-silico tools predict a potentially damaging effect, but the laboratory states that there is insufficient evidence to determine its clinical relevance. It has not, to their knowledge, been reported previously in the medical literature/disease databases.

CNV analysis was negative and no additional candidate variants were reported. Mitochondrial DNA was also analyzed.

The report discusses COL12A1-related conditions such as Bethlem-like myopathy/myopathic EDS and Ullrich congenital muscular dystrophy.

I do have mild scoliosis and a high-arched palate, but I don't have obvious muscle atrophy, significant contractures or progressive weakness.

My geneticist suggested that I could also do a separate FSHD test to formally rule that out, since WES does not necessarily detect the type of genetic alteration involved in FSHD.

My questions:

1. Does this sound familiar to anyone with BFS or neuromuscular hyperexcitability?

2. Has anyone had widespread fasciculations + muscle soreness/fatigue + tremor during sustained muscle contraction, while having normal strength and CK?

3. Has anyone with a mild myopathy experienced this kind of whole-body shaking while holding a posture?

4. Has anyone had a COL12A1 VUS and later found out whether it was clinically relevant?

5. Would you recommend FSHD testing, muscle MRI, or repeating the EMG?

6. Does this overall pattern sound more like neuromuscular hyperexcitability/BFS than a progressive muscle disease?

I'm not looking for a diagnosis from Reddit – I'm mainly interested in hearing from people who have had a similar combination of symptoms and how their diagnostic process turned out.

Thanks!

26 male

Hi, I’ve been having muscle twitches for about a month and a half now so I decided to see a neurologist. It started in my right left muscle for about 3 days or a week then started getting little twitches all over my body. I don’t have any clinical weakness as of now but I feel like I’ve noticed more things since I’ve fixated and worried about it more. I’ll notice my heel drag on some steps when walking, some aching pains that come and go, and other little things.

The neurologist did a whole exam and said he thinks I don’t have ALS and that I’m pretty strong but we’ll do tests anyway just to see everything. He ordered an EMG in December and did some blood work including NFL and CK test. I had the CK test done a few weeks ago with my regular doctor and it was normal at 176. I just got the result for CK today and it was 276 which is elevated and out of range. I was sore from a workout two days ago and I took a walk (40 minutes) to the neurologist before they took my blood.

I’ve read that slightly elevated CK levels are normal in ALS patients and I’m freaking out as of now. I told myself I’d see a therapist for my anxiety when everything comes back normal but now I’m deep in the hole again.

Have you guys had elevated CK levels?