waxing/waning weakness

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annabelle1619

New member
Joined
Mar 11, 2009
Messages
6
Reason
PALS
Diagnosis
02/2009
Country
US
State
WI
City
MIDDLETON
anyone notice that their weakness waxes and wanes? first my hands are bugging me most, then my feet, then my calves etc. anyone else?
 
twitching vs weakness

i'm certain you've all been over all these basic issues but as a newbie i have so much to learn about ALS. it is such a blessing to find a place where i can ask some of my questions.

while my weakness hampers my acitvities and plagues me, i am more driven crazy by the constant muscle twitching. all over. i'm only weak in my hand, foot and calf so far but i twitch just everywhere. anyone else? anyone have thoughts about the relationship between the fasiculations and the rate of progression?:confused:

thanks, and again, nice to meet everyone!
 
Hello annabelle do you want the blunt truth or candy coated
 
Ok, when I had strong fasciculations for a prolonged period I noticed a large decrease in strength over the next couple of days.
At one time over a two week period I would have strong fasciculations for prolonged periods (10 hours or more) they were so strong the bed would shake. this happened about every two to three days and in that period I feel I lost 1/2 or more of my strength. during that period I lost the ability to climb stairs or walk without a walker. I at one time was a concrete form builder now I can't lift a 30 # bag of dog food in august I could lift my 5 year old granddaughter and run with her today I can't even lift my 20 month old grand son. I was put on Rilutek and I started a supplement regimen in early Feb. and it seems to have slowed almost to a stop. I havent had an episode for around 5 weeks now and seem to be holding my own and actually showed some improvement. now my strength seems to fluctuate on a daily basis. I don't know if it's the pills but I'm not willing to stop and find out. all I can say is keep up your hope and absolutly don't back down. I have never been a fearful person, but now I must face the one fear I have always had, being paralysed I never believed I would have the moral strength to not take my own life rather that face this one, but with the love of my family and others I will prevail. I think the grieving stage is over for me. you must go through it, take all the time you need but don't dawdle on the way.
 
I asked at my last clinic visit about this, why if the disease is progressive my weakness is better and worse at times. The answer given was that all over fatigue also has a direct impact on our muscle strength, and this was why it was so important not only to make sure I didn't get overly tired, but to try to plan my days around when I generally feel the most energy, Some people may feel stronger first thing in the morning (not me!) some stronger in the afternoon.

I wonder if maybe why you've noticed a fluctuation between the difficulty fluctuating between various limbs, coincides with the cycle of de/reinnervation that your muscles are going through. Just a thought.

Welcome to the forum, Annabelle and NSDvic :)
 
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