my ongoing 2-year stint with twitching, i don't know what to do or what to even think anymore

TW for disease mentions. not the one we worry about explicitly, i will not mention it by name. if i accidentally did please let me know and i will edit it out. i know how triggering it can be for people, including myself.

hi everyone, longtime lurker but never spoke before. 20f. i am freaking out. not asking for advice or anything, i'll probably talk to my doc about it and i'm sure my therapist will probably help me out a bit tomorrow, but i gotta get this out somewhere and just feel better in the company of other people who experience similar i guess. i don't know.

i started getting fasciculations in july 2024 at age 18, i had just read about the bassist from toto dying of the disease we are all afraid of in a wikipedia binge and remembered that it was in fact a condition that existed and sure enough a few days later i got a recurrent muscle twitch in my right finger. pointer or middle, don't really remember which. my life has barely known peace since. within days the twitches were all over my body, happening randomly out of nowhere and causing a lot of distress. somewhere around this time, i don't remember if it was before or after the first twitch, i may have caught a case of covid (untested and 3x vaxxed so unsure if i had it or not, i think it would likely feel like a cold or flu like it did for me) and then i got a headache that lasted a month, and immediately jumped from that dreaded 3-letter interloper to a brain tumor. then like 200 other possible diseases i could have had. visual snow, brain fog, confusion, headaches that jumped around my head constantly, brain zaps, and of course, unrelenting muscle twitching that probably occurred around a dozen times in any given 3 minute span. rhythmic, pulsating, sometimes just little pinprick-like muscle fibers twitching, sometimes larger and more pronounced, but literally anywhere on my body. i dropped out of college 3 months after starting.

when i came home, my symptoms persisted but subsided for the most part, and i honestly found a bit of fun in taking note of when the twitches would happen and where, some morbid fascination with my own body's weird symptoms i guess. they slowed down as my anxiety lessened, and now i was getting them only a few times from anywhere between 5 minutes to an hour before experiencing new noticeable twitches. by march 2025, they had almost completely subsided and my life felt back on track. i got a few twitches a day maybe, possibly more that i didn't even notice because of how good i was feeling. i remember one time in april after a 4-day dogsitting gig noticing my thigh twitching, pretty frequently for about an hour before going away, and thinking to myself, is that really what i got myself so worked up about?

2025 to 2026 was great for my symptoms. i really wasn't too terrified at all, and when they did happen i was moreso just accepting of them than anything else. nothing too crazy, but i did have a few occasional transient nervous breakdowns where i did think about them being something potentially fatal. i have some gnarly health anxiety (as if my diatribe thus far has not made that obvious) and i am so terribly focused on everything to do with my body that anything slightly out of order makes me freak. i started college again, passed with a 3.86 gpa, and fast forward to the beginning of this very month, when i fell into a lake and caught sinusitis. being a noted hypochondriac, my brain immediately jumped straight to it being the brain-eating amoeba. i completely spiraled, readying myself for death every day. i live in the northeast and the water is so fucking cold i don't know why i ever wasted my time worrying about it, lol. alas, the 15-day incubation period passes as does my illness, but in my two-week baseline of "ohgodiamgoingtodie"-level anxiety i begin noticing something strange. my fasciculations have come back in full swing, not that they ever really left but they were down to just a few noteworthy ones on any given day before my anxiety spiked, and i was now presenting with some interesting nervous system symptoms! a lot of gastrointestinal stuff, and i noticed that a muscle in my stomach was twitching particularly badly during the course of my sickness that went away after the fact. weird. when i yawn, an electrical tingle sends itself down my back and into my ribs. a perfect lhermitte's sign! and what does a lhermitte's sign entail? our mutual "friend"'s far-less scary but still debilitating cousin, multiple sclerosis. or a spinal column issue. or neck compression. but my brain won't hear any of those. i found myself getting tingling all over, on the left side of my face, on both arms, both legs, and even small but like 2/10 level painful pinprick like sensations in my extremities and sometimes random parts all over too. i smoked some weed to feel better one night but it only led to me having the worst panic attack of my life, causing this terrible tightness in my body and repeated convulsions in my legs that would come and go almost rhythmically. that did not help me worry less. later on, i remember thinking at work, it's definitely just ms or something to do with your neck, don't even bother thinking about the elephant in the room. in the last few days, i decided to think about the elephant anyway.

and lo, i am spiraling. so much worse than i ever have been. the sensory nervous symptoms minus the lhermitte's sign feel like they have disappeared in lieu of so many more fasciculations than my baseline, and here's the kicker, they're getting real picky about where they happen! mostly my left leg, on the calves and thighs and sometimes ankles. they still happen all over though. i have currently been dealing with that plus a lovely little vibrating sensation at the bottom of my foot for the last few days. sometimes it jumps to the right, but it is most prominently occurring on the left. right smack dab in the middle, right where the arch is. naturally, i looked into other symptoms of the dreaded disease, and oh lord, what a mistake. i have noticed that the muscles on the left side of my body are quite smaller and less firm than they are on my right. for instance, my hand. now, i can use both hands quite well (as evidenced by this terrible block of text i am subjecting you to currently) and i can pick up a guitar pick and completely unbutton and rebutton my shirt with my left hand (it takes like 2 or 3 minutes but i think even the right hand does that) but my tendons are more visible, i can see my anatomical snuffbox much better, and when i pinch the muscles, they feel relatively firm but squishier than my right. for the record, i am right-handed, so it's at least a little bit of solace that this isn't occurring in my dominant hand, which i understand is usually where the symptoms of *** begin to present. my thenar eminence is smaller and squishier, which scares me, but i don't think your average person would even really notice. the right wrist feels fatter and squishier whereas the left wrist feels practically bony. i have lost weight, so maybe my right side is having a harder time getting rid of fat? who knows. considering i have full use of this hand still (barring the fact that my typing has gotten a good 10 wpm slower and i have been making more mistakes recently, probably from hyperexcited nerves given recent events, but my brain, again, doesn't care) i am a little bit relieved but still very cautious of how scary those signs are. my left bicep is also smaller than my right, i have taken up lifting since january doing just barbell curls every morning to keep my arms in check, i understand usually the non-dominant arm lags a bit and that's normal, so i am not super terrified about that either. what is really screwing with my head right now is the fact that the toe pad on the pinky toe side of my left foot is quite literally flat and visibly smaller than my right. i do have a potential explanation for this as well, though, in that i have been wearing tight shoes my entire life and quite a few years back i noticed that my left pinky toe was going numb before eventually losing most sensation without tingling. i suspect this nerve compression may have contributed to this quite noticeable difference in my foot which i feel might have honestly been around longer than i am currently thinking. it doesn't help that balancing on my left foot is harder, even though i never fall when attempting it. i just get wobbly.

of course, even though this logic exists within me, it doesn't help. nothing helps. i am sore all over and convinced it's my entire body wasting to nothing. i am convinced i will be dead soon. i know how rare juvenile *** is, i know that it doesn't present with sensory symptoms, and i know that the 2-year timeframe for my twitching makes the likelihood even lower, but i can't help but think that i just caught the worst dice roll of all time. i pass all the home muscle tests of my hands and legs, i can walk on my heels without the balls touching the ground, i can walk on my tiptoes with ease, i can do all the hand tests where you point your thumb at the sky and try to bring it down to your palm and all that, i lift weights and work at a job where i am regularly lifting 50 pounds or more without dropping anything, and yet here i am. finally posting on this sub after years of lurking. because i am terrified. it seriously feels like my body is wasting away to nothing and that my entire left side will be unusable soon. i know there's nothing i can do if it does happen, so i don't even really know why i'm so worried. i just wish i never noticed all of this a week ago. am i looking for reassurance? i don't know. i've gone to the doctor so many times in these few years and she refuses to even order an mri. i have just worked myself through getting a referral for one though and am going for bloodwork to make sure it is safe to do so in a few days though. i am really hoping that there's a treatable tumor or ms lesion in my brain that will explain all of this without it being something that's going to kill me. does anybody else have similar symptoms to me? are you doing okay? i'm sorry for dumping all of this, i just need to get it out somewhere