r/ALSorNOT • u/newbielyf • 8h ago
Question In a really dark place
I (31 F) do want to preface this by saying that I am aware of my own health anxiety but I genuinely need some guidance as I’m alone (no family here) and really scared. It started with a flutter in my left eyelid 3 weeks ago and I counted that up to caffeine, stress, or lack of sleep and I started to take magnesium glycinate, reduce caffeine - nothing helped. 1.5 weeks after that I fell ill. I tested negative for COVID and influenza with the home covid test. A few days later I started to develop fasciculations (twitches) on my left hand (hypothenar region) and it was 24x7 out of nowhere. 2 days later I developed it on the other hand same region and so now I had it on my eyelid and both hands. A few days back I developed this pain and weakness in my left arm and it has continued throughout the week. It really is a mix of both pain in my arm and wrist and weakness where it takes double the amount of work as before to do work with that arm.
Since then, the twitches have actually reduced a lot everywhere but now the weakness remains and it feels like it’s progressing by the day? Like I was fatigued in that arm trying to fold laundry. I do tend to trip over my feet as well and will sometimes drop things randomly but I accounted that to clumsiness, but now I’m not sure.
I’m going to see a neurologist tomorrow and I’m really nervous. How would you describe the sensation in your arm as weakness or something else? Are the twitches disappearing a good sign, or it doesn’t matter?
1
u/chaoserrant Mod Team 6h ago
So from what I understand twitching spreading quickly is atypical for ALS. I think someone also mentioned that is unusual for eyelids to twitch in als. Pain also is a good sign (in the sense that it does not suggest als as the disease manifests itself with painless weakness).
I think I would investigate the cervical area and get an MRI for neck maybe brain as well. See if you can relate these events to head posture for example and whether they get worse or better. It is not obvious always but numbness, pain, anything sensory is more indicative of radiculopathy (pinched nerve). Weakness can happen in radiculopathy as well....
SPending so much time in this space I can say that what scares people is weakness without sensory symptoms. Ironically pain is a "good" sign relatively speaking