For the twitchers

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New member
Apr 10, 2018
Learn about ALS
5 years ago I posted here, scared to death. The first response was “drink a gatorade, nothing is wrong”. I realized then that I shouldn’t be trying to get a dx here…but it’s scary as heck when your body starts doing weird stuff literally over night and Dr’s stare at you like you are crazy.

I am posting an update because I see the top posts are twitching….hopefully I can help someone stay out of this rabbit hole.

My story starts with years long fatigue and muscle pain but nothing so bad that I couldn’t exercise and remain active. Then one morning I woke with horrible hand and forearm pain and tension, as if I had been doing forearm curls for days. Within 3 weeks it was full body. The 5th week twitching started. By the second month I was having weird vibrations, shocks, numbness, stabbing pains, stiffness, cramps. What the Dr’s did in response should be criminal, but not going there in this post.

Short story is that I had to become my own advocate. I ended up at Washington U where I was dx’d with Small Fiber Neuropathy. I got this from a Lyme infection years before.

I don’t think my diagnosis journey is over as it is progressing and I am struggling…making me think there’s more going on. BUT, even though I have ridiculous brisk reflexes, twitching everywhere (especially after movement), muscle pain, & fatigue, I know it is not ALS.

I have learned more than I would like to know about the body’s nervous system. There’s so many things that can cause twitching. Yes, you can have brisk reflexes and neuropathy (my neurologist says you can’t, Washington U says otherwise). You can improve things with a healthier lifestyle, but get your head right to accept this may be the new normal. You may never know the source. Stay positive.
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