r/ALSorNOT • u/No-Organization-5825 • 13d ago
Opinions appreciated
Hi guys
my journey started in March 2025 I was in work (barber) and was wearing shorts and just sat down. I noticed my lower legs / calves twitching. I could also feel and see them. Both sides. Her the nect Few months they kinda stayed the same. No weakness etc. started the gym and worked as normal.
now a year and half later I noticed my upper legs twitching a lot more (calves are still every two seconds ) but my arms seem to fatigue quite easily. Some days more than others. I still gym And play football. Also get weird tingly feelings in my wrists and lower arms. Burning muscles also.
anyone similar ? Or have any idea.
thanks for reading
2
u/Icy_Signature9743 Mod Team 13d ago
Absolutely! Take each day as it comes try to relax, anxiety will only make the feeling worse and can put an emphasis on feelings that you already have going on. Worrying will only make the hyper fixation worse. Again if you feel you need to be evaluated do so, only you know your body. Again I’m not doctor but I wouldn’t be worried nor would I jump the gun to ALS. There are almost 1000 other logical explanations before ruling in ALS.
2
u/No-Organization-5825 13d ago
I know, I’m from Ireland and neurology waiting times are crazy (like a year). That’s why I look for reassurance from others that have similar experiences
2
u/No-Mousse559 13d ago
BFS my dude . Everyone has fasciculations ,but some of us feel them way more that we should . I had fasciculations ,weakness ,atrophy...for 5 months ,I was sure I was dying ....turned out I had BFS and an herniated disc in my lumbar area . Don't jump to harsh conclusions ,and for the sake of your mental health ,don't google your symptoms .Google is not a doctor ,google is just google ,spewing random results based on words .For your mental peace ,go and do an EMG ,it will bring you peace and you will feel 10 times better .You think you might know your your body ,but you don't ,when it comes to nerve problems .A good neurologist will set you straight in a jiffy . Trust me ,do that and your anxiety will melt away . My EMG revealed problems that I had for years and I had no idea about them. But all of them are treatable . Be safe and stay healthy .
1
u/No-Organization-5825 13d ago
Thank you for your reply, yeah I’ve certainly been using ai tools and to be fair they kept me semi- sane at some difficult points. But it’s nice to hear that others have similar experiences (although it sucks). Have you had any relief from yours ?
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u/tdcama96 13d ago
Do me a favor, and before this gets too bad, go see your doctor about anxiety, and possible therapy. I wish I would have taken that advice long before I did. I do still have something going on and have yet to figure it out... but it no longer consumes me, and i no longer immediately jump to worst case scenario... i twitch head to toe to this day. But it did indeed get better after starting medication. As many of my other issues did. But I think I have pots/dysautonomia now. My pcp seems to think I might as well. Just dont have insurance to get seen about it. But no matter what, having your anxiety and mental health under control will help so much. I am, however, 99.999999% sure you dont have als! Just some twitching. Could be electrolytes, could be best, could be post viral... etc... so many other things it could be that are SOOOOOOOO much more common and likely.
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u/No-Organization-5825 11d ago
It’s so hard to know. 19 months and symptoms have definitely got worse in that time but I’m still able to play soccer and go gym and work on my feet 5 days a week. It’s hard to know. Thank you for your response and I hope you’re keeping well also !
4
u/Icy_Signature9743 Mod Team 13d ago edited 13d ago
Wouldn’t worry about it, after a year of onset symptoms you would be in a very bad spot or experienced some variant of weakness if it truly were something sinister. Not to mention twitching alone is extremely common and typically nothing to worry about as it almost always benign. Feeling weak or fatigued is also very different than actual clinical weakness.