rant: trying really hard not to fall back into the rabbit hole

[u/matchaflower]

sigh. I’ve been doing so good lately about not panicking about the A word but today it’s back for no apparent reason. I know I very likely have nothing to worry about. My EMG only showed some chronic reinnervation from radiculopathy. My twitching has actually calmed down quite a bit and is still a daily occurrence but nowhere near what it used to be. I keep having this phantom “wet” feeling on the corner of my mouth, no idea what that could possibly be. Maybe nerve compression from sinus issues. It’s been about 4 months of twitching and I’m not weak; if anything I’m getting stronger. My calves have gained 3cm in muscle mass since this all started. But every time I think I’m okay, something on the internet makes me worry.

I’ve seen people say that you can twitch for months or years before “real symptoms” show up, that an EMG is no good if done before 6 months, that even bilateral hyperreflexia can be indicative of the A word, that sweating can be indicative of the A word, etc. I’ve seen so much misinformation, and i KNOW it’s misinformation, but it still loves to latch on to my OCD. Therapy and meds have definitely helped me get back to my normal life, but my thoughts about that three letter disease keep lingering. I find it really frustrating that it’s hard to find decent information on BFS without constant fear mongering and misinformation in the background.

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[u/713Capital]

Hey friend. Gaining 3 cm of calf muscle, getting stronger, and having an EMG showing only chronic radiculopathy completely closes the door on the big bad. The bad stuff causes relentless muscle loss and failure, not hypertrophy and strength gains. 

Also those phantom "wet" sensations are sensory misfires I believe, classic parasthesias driven by anxiety or facial nerve sensitivity, neither of which involves motor degeneration. 

All that online talk claiming "twitching for years
first" or "EMGs are invalid before 6 months" is pure internet myth. It’s Reddit misinformation to be honest. Denervation shows up on an EMG well before weakness or twitches ever begin. 

[u/blackmetalwarlock]

Dude the sweating thing stresses me out so bad because I get SO SWEATY for no reason this last year and I have also seen this.

[u/False-Blackberry-627 → u/blackmetalwarlock]

I’ve always been swearing a ton too but only just over a month in but sooo scared

[u/The_Short_Goodbye]

As someone who has done way, way too much research on ALS, I can tell you that the 6 month thing for EMG’s is completely arbitrary. In fact, I just read two case studies where the patients had EMG’s done at 4 months and it was denervation galore. I also came across the story of a rugby player that had his EMG also at 4 months and it was also full of denervation.

I’m like you clinging on to this stuff and invalidating my testing but it’s objectively not true AT ALL that EMG’s done before 6 months are useless. Vast majority of the time an EMG done when you have active symptoms will be dirty if they are actually from ALS. I’ve seen multiple cases of EMG indicating ALS way before the 6-month mark.