Twitching

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.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,994
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello-
Please read this: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

You're doing a lot of overthinking of a very common thing (twitching) that happens for a whole variety of reasons, including no reason at all. Twitching in ALS is part of a whole constellation of symptoms and you report nothing like the pattern seen in motor neuron disease.

Please understand a few days of twitching bringing you to post on a forum that exists to support those diagnosed with a terminal disease is a gargantuan leap and definitely a sign you need to sort out how you deal with anxiety, regardless of whatever physical issues you have going on (which, if it's anything, is for your doctor to discover, not the folks here). That's really good news and I hope you are able to leave this place behind and not continue researching here now that you know twitching isn't automatically ALS.

All the best
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,470
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You already know you are not about to die because you have a twitch in your thumb.
Please leave here and work with your doctors.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,667
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Anthony, as you yourself wrote...

"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. "

Key sentences.... "But overall, he just brushed it off. Probably irritated him by bringing it up, as I'm irritating all of you now."

Hmmm, "....as I'm irritating all of you now."

So... ?
 

Anthony9703

New member
Joined
Jun 2, 2020
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
NYC
Thanks everyone for your responses. I had a sense that that's what they would be like. I'm not too concerned about my thumb, it was more the fasciculations. Thanks again.
 
Top