Clarification regarding twitching

[Smegler]

First time poster here. I have read the stickies and tons of information on here and elsewhere about twitching. One of my biggest questions is for people who are diagnosed with ALS who wake up one day and notice failure (to turn a key, to button their clothes etc) did you notice twitching prior to failure? Is it possible to think that people diagnosed with ALS just don’t notice the twitching before they notice the atrophy or clinical weakness. Perhaps twitching first is just underreported? Or is it really just clinical weakness develops and then atrophy and/or twitching follow. If clinical weakness first ..is the weakness truly a gradual thing or did you slowly notice some weakness in say the hand or leg and then noticed you couldn’t turn the key? And if it’s does just happen that one day someone with als wakes up and can’t move a body part then can someone explain how or why this happens?

A little back story on me. I’ve had twitching since may of 2024. Widespread..pretty much everywhere like little pops of twitches mostly in all 4 of my extremities; occasional buttocks but mostly calves, hands, feet, Was really bad from May to probably august. I started on Paxil as I went through a tough time finally dealing with the loss of my mother 2 years prior and the twitching seemed to resolve for several months however has recently just returned. Again another stressful time for me right now…approaching 1 year when I started twitching, my mothers bday/death anniversary and my father ended up in hospital this weekend which caused heightened anxiety.

In October I had emg/nerve conduction test which they said was normal. No fasiculations noted. I also had brain MRI in December which was normal. Clinical exam by 3 different neuros from august to February including 1 ALS specialist said no clinical weakness or atrophy noted. 2 said I had bilateral/symmetrical hyperreflexia at my patellar reflex at 3+, the other neur said 2+ in February. When I get twitches they mostly come and go but I do have a constant daily twitch in right hand that I actually think is a palmaris brevis spasm and has been constant for probably 10 months—no atrophy has developed here despite constant daily twitching. I’m to follow up on a year with neuro unless I get worse.

I believe my twitching is health anxiety related but it’s still very scary when it happens and makes my mind go crazy. I’m an OT and I just guess I just don’t understand how the clinical weakness happens so quickly without going noticed? Can someone help me understand this?

Also my neurologist asked if I had Covid around the time my twitching started. I don’t believe I did when it first started but I did just have to recently right before things got stressful again for me. Is there a correlation/connection between sickness and or Covid vaccine to neuro symptoms specifcally twitching?


If you have read this far thank you. and thank you in advance to anyone who responds and provides some clarity for me.

 

[lgelb]

No, PALS do not miss inevitable twitching before atrophy/weakness. Many don't have it at onset. Some never or barely have any.

10 months of widespread twitching with one localized area, without weakness, with clean exams (patellar hyperreflexia is a common variant in itself) and EMG, you don't have to worry about ALS.

You have documented the interplay between stressful events and twitching, which many anxious posters here report. I would imagine you have had patients whose abilities were better demonstrated when they were calm rather than anxious about their progress.

Covid can cause lots of post-viral symptoms but doesn't sound relevant here time-wise. Benign fasciculation syndrome, which doesn't have a known etiology, is a real thing. You're fortunately in the wrong place here, but if your concerns are disabling, I would certainly recommend counseling, which might help illuminate where you can have more of an impact on the mind/body stuff. Paxil isn't a cure-all for that.

There is no point in your worrying about the way that muscles can short-term compensate for others that no longer have enough healthy motor neurons controlling them, leading to "overnight" losses of function. That's all about ALS, which you don't have.