Does twitching decrease as mobility decreases?

[sw3708]

Hi all,

I read posts regularly but don't post myself. I have a question for you all.

My spouse is 39 and was diagnosed 9/6/2016. His right arm used to twitch like crazy at night as he slept. As his arm has lost more and more functionality; the twitching seems to have lessened.

Now his legs are twitching strongly at night. It seems to interrupt his sleep. I am guessing this means the legs are next? I know that everyone is different....just looking for others experiences.

We have a split level home with plans for remodel to include a platform lift over the summer; worried about timing but hoping it will all work out.

Thanks to anyone that has time to respond. This forum is so helpful.

 

[GregK]

My twitching decreased as my muscles atrophied.

 

[affected]

I would think you are right, that's how it went with my Chris.

Twitching in a new area indicated it was the next to be affected.

 

[Nikki J]

I think the twitching being a harbinger of the next place to be affected is common.

The following comment is addressed to the worried DIHALS: Even though this is true it is still generally untrue that in the beginning of ALS twitching comes first. The pattern is often weakness then twitching in one area ( say a leg) after a time the other leg or an arm might twitch and then become weak. I don't know why this is so but it is so please do not use this to fuel your twitching fears.

 

[WendyWooG]

I tend to find the twitching increases at the same time as I experience a new loss of function. I don't get advance warning i go for a while with just little twitches every now and then, then I find something not working and get 2/3 days of big twitches which are quite uncomfortable.
They have always been on a bit of a time lag though didn't notice any til around the time I was given the probable diagnosis.

Wendy

 

[sw3708]

Okay. I guess it's good we have vacations planned for the first part of summer and we are moving forward with the lift. It's so sad to watch and I'm struggling to stay positive.

He loves to cook and his dominant arm was affected first. He still does cook but it wipes him out and his back hurts from compensating for the one sided weakness.

I'm not telling you all something new; I understand that but this is so hard right now I worry how I will handle it when he really starts to need help. I joined a caregiver group on another site and it can get quite negative. But maybe it's just reality?

Anyway thank you for responding and reading!

 

[Firefighter58]

I had twitching in my legs and my doctor treated like restless leg syndrome and no problem for the last year. sleep well now.
Al

 

[Kristina1]

So when you say twitching precedes a new area that will be affected are you talking about constant fasiculations? For me I had weakness for over a year before I noticed twitching in that area (my forearm, fingers, and my thumb muscles). The twitching then jumped to my other arm and moved up to my biceps on both arms. This twitching is constant. Tongue fasics are also constant (and I have long had weakness there). But I also get twitches that come and go all over my body- upper left leg, both buttocks, chin and other facial muscles, and more recently my abs, back, and foot. Does intermittent twitching also indicate the area will be affected soon or is that just a normal background symptom? Is it just constant twitching in a new area that indicates it is going to be affected next?

Hope my question makes sense.

 

[Nikki J]

Your question is perfectly clear I think people with bulbar often have generalized twitching and some PALS twitch more than others

I don't think the twitching being a harbinger of weakness is a hard and fast rule but I do think when it happens it is ,if not constant, at least frequent enough that it makes you wonder. My right leg twitches quite a bit. I do get an occasional twitch elsewhere but it is. Mostly the leg and where I suspect it will go next

 

[affected]

There are no hard and fast rules, there are so many variables with how ALS progresses.

For Chris, twitching that was connected to ALS was constant and visible. It would change in intensity at times, but once an area was twitching it was twitching, even when he was sound asleep. Hope that helps.