Long term muscle twitching, some pain, no help yet

Posted by missle @missle, Dec 8, 2023

Hello All. First time joining a forum like this. One year ago, I started wide spread muscle twitching. Just over my knee for 2-4 weeks and then - boom - my whole body was twitching non stop. Dr ran some blood tests, which were all fine except some minor inflammation. Referred me to a neurologist but it took 7 months to get the appointment. Over the past year, the twitching is daily but it isn’t non stop anymore. Sometimes one area is worse (last week my left elbow area, past couple of days, my right biceps). Legs are every day. I get some weird sensations in my feet and toes sometimes and zingers - painful electric shock like pain that jerks my muscle - but those are only 5-10/week. Neuro exam was fine - I have perceived weakness but not overt weakness. My EMG/NCS isn’t scheduled for another 7 weeks (13+ months after things started). When a new twitch pops off (like in my arms the last few weeks) I get scared about ALS. I’ve tried to learn more about BFS but there’s not a lot out there. I have notable less muscle in my non-dominant hand and a low level of pain daily. Hoping someone else has experienced something similar while I wait the 7 weeks for my EMG/NCS…. Both looking forward to getting some answers and am nervous about what those answers may be.

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SusanEllen66 | @SusanEllen66 | Apr 19 11:46pm

In reply to @missle "My twitches vary. Some are distinct, what I call ‘traditional twitches’ like when you see someone’s..." + (show)

@missle that sound annoying for sure.
Could you have neuropathy ?
I do, and I get all kinds of strange sensations randomly everywhere.

edrinez | @edrinez | May 11 1:07pm

I have been twitching for over 3 years now after covid and same with my fiance.. we are both under 35...

However it undoubtedly looks like MND for me.. The first 2 years were mostly fine, just muscle fatigue, tongue with fatigue a bit when eating large meals.. Arm would get tired a bit faster.. but at roughly 2.5-3 years in my voice got hoarse and quieter, drinking water would make me clear throat.

I am now diagnosed with double vocal cord atrophy, and i have a deviated uvula. Strange for Bulbar ALS to progress this slowly, but I am having undeniable and clinical atrophy at this point, i also feel weakness in my pinky and ring, while still functional it is undeniably a bit weaker.

Ofcourse classic ALS would leave me rendered full disabled by now, however I have seen many cases of younger cases progressing slowly (over the course of 10-20 years). While rare, it happens. No 2 cases are the same.

My fiance who is even younger than I, also has tremors, her muscles shake doing normal tasks. She has definitely "progressed" less than me, thankfully. Not sure why, only thing she does different is take nicotine, so maybe I will try that - but could also be random/genetic.

I can also feel my diaphragm weakening, on pulmonary tests I am not able to exhale fully, and i have had breathing issues which I suspect is a combo of my vocal cord issues on top of my diaphragm issues. I have also developed a heart arrythmia.

Before my infection I had 0 issues, now I have pulmonary,cardiac, and the worst of all neurological issues that point toward something terminal.

ssalib | @ssalib | May 12 1:23pm

Any news?
I get all over twitches and also weaker on one side. When resting it also feels like I have internal muscle vibrations. I had a nerve conduction that was clean but it’s still going on.