Anthony9703
New member
- Joined
- Jun 2, 2020
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- NYC
Hi everyone - let me start by pointing out how incredible it is that a board like this exist. The support you show for each other, as well as for us non-diagnosed, speaks to your sense of community and desire to help other people.
I have read the rules and I know that they will be thrown right back at me. I know what I am about to describe is very early and the symptoms are mild, but I was hoping to (1) get your general reaction, and (2) learn more about how fasciculations feel.
I am a 32 year old male, no family history. 7-10 days ago I noticed a twitch (or quiver) in a thumb, when typing on my computer. There is no loss of movement/strength nor perceived atrophy. The twitch typically happens when my thumb falls into a certain set of positions. I've been more mindful of stretching my fingers and typing on my computer/tablet/phone less, and the twitch seems to have improved, but not fully gone away. I have some light soreness in my hand, my other hand (but no twitch), and upper body - maybe even "extremely light" soreness, attributable to regular aches and pain, or lack of sleep (more on that below).
This is the point at which I Googled "thumb twitching" and learned about ALS. Previously, all I knew was that it was a rare but fatal disease that limits muscle control prior to death. I didn't expect to see ALS listed as one possible cause of my thumb's twitch, which created some alarm.
Shortly after noticing my thumb twitch, I noticed that when falling asleep I get periodic fasciculations all over my body. They're not painful, I don't lose control of the muscle (i.e. I can move it during the fasciculation and stop it), and they're short. I haven't noticed any pattern in terms of location, other than that they're all over my body. I've noticed since then that it does happen sometimes throughout the day. When trying to fall asleep, I probably get one every 5-15 minutes. So far, I think I've only observed fasciculations when I'm at rest. Honestly, at first I thought this type of thing happened to everybody, and I'm not 100% certain it hasn't been happening to me for years or potentially for even my whole life, but my wife said it doesn't happen to her and that seems consistent with what I've read online. My research, and these forums, suggests this might be more likely to be BFS than ALS, but of course nothing is certain. Also, and this is one place where I would really appreciate your perspective, I'm not even sure which of my fasciculations are truly fasciculations, and which are something else (e.g. my body settling, sweat, being in an uncomfortable position, feeling my pulse, throbbing for soreness/overuse). Some of them are clearly real though and they look like the videos of fasciculations I've seen online, but others feel so mild that I question whether it was even a fasciculation.
I performed some of the strength tests mentioned here, and passed all of them. I can walk on my toes and heels. I tossed a baseball in the air a few times and caught it with my bare hand, and I was able catch it using just my thumb and index finger, too. I've been doing pushups here and there to test my strength, and haven't noticed any unusual difficulties.
I told my primary care doctor about my thumb, fasciculations, and ALS during my annual physical this week, and he didn't even directly respond to my ALS comment. He said the thumb is probably over use. Based on my diet and lifestyle, there's also a chance I have an electrolyte imbalance. I'll get bloodwork results back for that soon. But overall, he just brushed it off. I probably irritated him by bringing it up, as I'm irritating all of you now. I'm planning on asking for a referral to a neurologist after I get the bloodwork results. (He also did an EKG as part of the physical, but idk if that will indicate anything in regards to ALS/fasciculations.)
My concerns are two-fold. First, that this is an extremely early presentation of a terrifying disease. Second, and more pressing, is that the fasciculations interfere with my sleep. Once I am asleep I have slept very well, but a couple of times over the past week, as I've laid in bed I have been hyper-alert waiting for the next fasciculation. Whenever it comes, it takes me back to square 1 in terms of being able to fall asleep. And then a vicious cycle starts, in which thinking about it makes it harder to sleep, lack of sleep potentially leads to more twitching, etc. It is worth noting that my whole life I've had trouble shutting my mind off and falling asleep. Meditation generally helps, but has been less effective this week; I think the occasional fasciculation, or the expectation of a fasciculation, snaps me out of it.
Any thoughts on this first concern? It is the scarier one, but I will readily admit that anxiety could be a factor in my level of concern. How about on the fasciculations? What exactly do those feel like? And overall, what would you recommend I do?
Apologies for the long post, and for posting at all for that matter - what I've described here seems more mild than most of the other posts. But I do really appreciate any perspective you can share. Thank you.
I have read the rules and I know that they will be thrown right back at me. I know what I am about to describe is very early and the symptoms are mild, but I was hoping to (1) get your general reaction, and (2) learn more about how fasciculations feel.
I am a 32 year old male, no family history. 7-10 days ago I noticed a twitch (or quiver) in a thumb, when typing on my computer. There is no loss of movement/strength nor perceived atrophy. The twitch typically happens when my thumb falls into a certain set of positions. I've been more mindful of stretching my fingers and typing on my computer/tablet/phone less, and the twitch seems to have improved, but not fully gone away. I have some light soreness in my hand, my other hand (but no twitch), and upper body - maybe even "extremely light" soreness, attributable to regular aches and pain, or lack of sleep (more on that below).
This is the point at which I Googled "thumb twitching" and learned about ALS. Previously, all I knew was that it was a rare but fatal disease that limits muscle control prior to death. I didn't expect to see ALS listed as one possible cause of my thumb's twitch, which created some alarm.
Shortly after noticing my thumb twitch, I noticed that when falling asleep I get periodic fasciculations all over my body. They're not painful, I don't lose control of the muscle (i.e. I can move it during the fasciculation and stop it), and they're short. I haven't noticed any pattern in terms of location, other than that they're all over my body. I've noticed since then that it does happen sometimes throughout the day. When trying to fall asleep, I probably get one every 5-15 minutes. So far, I think I've only observed fasciculations when I'm at rest. Honestly, at first I thought this type of thing happened to everybody, and I'm not 100% certain it hasn't been happening to me for years or potentially for even my whole life, but my wife said it doesn't happen to her and that seems consistent with what I've read online. My research, and these forums, suggests this might be more likely to be BFS than ALS, but of course nothing is certain. Also, and this is one place where I would really appreciate your perspective, I'm not even sure which of my fasciculations are truly fasciculations, and which are something else (e.g. my body settling, sweat, being in an uncomfortable position, feeling my pulse, throbbing for soreness/overuse). Some of them are clearly real though and they look like the videos of fasciculations I've seen online, but others feel so mild that I question whether it was even a fasciculation.
I performed some of the strength tests mentioned here, and passed all of them. I can walk on my toes and heels. I tossed a baseball in the air a few times and caught it with my bare hand, and I was able catch it using just my thumb and index finger, too. I've been doing pushups here and there to test my strength, and haven't noticed any unusual difficulties.
I told my primary care doctor about my thumb, fasciculations, and ALS during my annual physical this week, and he didn't even directly respond to my ALS comment. He said the thumb is probably over use. Based on my diet and lifestyle, there's also a chance I have an electrolyte imbalance. I'll get bloodwork results back for that soon. But overall, he just brushed it off. I probably irritated him by bringing it up, as I'm irritating all of you now. I'm planning on asking for a referral to a neurologist after I get the bloodwork results. (He also did an EKG as part of the physical, but idk if that will indicate anything in regards to ALS/fasciculations.)
My concerns are two-fold. First, that this is an extremely early presentation of a terrifying disease. Second, and more pressing, is that the fasciculations interfere with my sleep. Once I am asleep I have slept very well, but a couple of times over the past week, as I've laid in bed I have been hyper-alert waiting for the next fasciculation. Whenever it comes, it takes me back to square 1 in terms of being able to fall asleep. And then a vicious cycle starts, in which thinking about it makes it harder to sleep, lack of sleep potentially leads to more twitching, etc. It is worth noting that my whole life I've had trouble shutting my mind off and falling asleep. Meditation generally helps, but has been less effective this week; I think the occasional fasciculation, or the expectation of a fasciculation, snaps me out of it.
Any thoughts on this first concern? It is the scarier one, but I will readily admit that anxiety could be a factor in my level of concern. How about on the fasciculations? What exactly do those feel like? And overall, what would you recommend I do?
Apologies for the long post, and for posting at all for that matter - what I've described here seems more mild than most of the other posts. But I do really appreciate any perspective you can share. Thank you.
