understanding symptoms

[Reef]

Hi
My husband has ALS and we are in early stages, he was diagnosed this summer. I am trying to understand and not panic every time something changes.... He has a lot of twitching that seems to travel in different parts of his body. Initial symptoms started in his throat, slurry voice etc. We talk about his symptoms on a daily basis to keep track of what is going on and I am trying to understand if what's happening is common so I was hoping for some input. He has not lost the use of anything yet but is feeling very tired and talks about stiffness in his body. Although he can have twitching all over for the most part it seems to be in specific places. One day it's the left side, next day it's in his core area, other days it's right side or more in the hands. It seems to be traveling through his body.
Does anyone think that drinking caffeine or being more active causes more twitching?
What exactly does the twitching mean? Does massage help? Is there any advice, tips, tricks?
I thank you in advance and admire you endlessly with how generous you all are with information for us newbies in the group!

 

[trfogey]

Hi, Reef,

Nobody really knows what specifically causes the twitching, also known as fasciculations, in ALS, so it's impossible to say what aggravates them and what doesn't. Caffeine in general is a nervous system stimulant and some PALS report that it can increase the amount of twitching that they experience. Likewise with exercise and exertion -- some folks are simply more prone to have episodes of muscle twitching after they exert themselves while others are less so.

Unless the twitching is causing some type of functional problem, I wouldn't be terribly concerned about it. As long as the muscle is able to twitch, there's still some "life" there. It's when they can't twitch any more that I start worrying about them. :wink:

If the twitching is causing functional problems, consult your husband's ALS clinic for advice. There are some medications that can help, but they do have side effects that your husband may find more bothersome than the twitching.

 

[Whitsend]

I get twitches all over my body literally all of the time. I've become so accustomed to it, I don't even notice it most of the time. If medical professionals have a difficult time getting his blood pressure (especially if the are using a machine), it's because the machine has a hard time differentiating between the pulse and the twitches.