Faciculations and Twitching

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bigmark1954

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Joined
Jan 31, 2014
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PALS
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01/2014
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US
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UT
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taylorsville
I am having significant faciculations in my left upper arm, and forearm. I am having them all over intermittently, but these on my left arm are pretty much constant.
I hope those of you that have had a history of faciculations, will chime in and give me an idea of the duration before losing or burning out the muscle group took for you?
I tried to get an idea during my last exam, but the doc would not speculate.
Thanks
 
bigmark.....you have been, by your admission, diagnosed with ALS.....your neuro who is following you is the best person to ask.
 
Mark,

It's hard to say - we're all different. My ALS started as intermittent cramps in my left hand in about 2011 or so. I was diagnosed shortly after I noticed fasciculations on my left arm in March 2012. ( they may have began earlier - but I was too busy to notice). Flash forward - I had completely lost the use of my left hand by autumn 2013. It went gradually. But, quickly followed by left arm, leg and foot paralyses - all of which has recently occurred in just a few months. So, timing? It depends on when you start the clock.

Mark, try to focus on what you can do... today. Trying to predict losses will only drag you down.
 
bigmark.....you have been, by your admission, diagnosed with ALS.....your neuro who is following you is the best person to ask.

Perhaps you did not read my thread.....it was clearly stated that my doc would not speculate, and gave me some abstract answer like 1-5 years.
I am a rookie on this forum, and apologize that my question did not warrant an answer from you related to what I was actually asking.
I thought this was a forum about MND, and people shared experiences and helped one another out with information.
 
I started bulbar, but body wide twitching started soon after.
It was getting worse and worse, I couldn't sleep.
I emailed my neuro, he said there is no rhyme or reason with twitching vs weakess.
That was three years ago. I barely notice the twitching anymore.
It's hard, but try to focus on the here and now.
Cheers,
Casey
 
I started bulbar, but body wide twitching started soon after.
It was getting worse and worse, I couldn't sleep.
I emailed my neuro, he said there is no rhyme or reason with twitching vs weakess.
That was three years ago. I barely notice the twitching anymore.
It's hard, but try to focus on the here and now.
Cheers,
Casey

Thank you Mr. cgars........that is kind of similar to what I am experiencing. Do you have any paralysis or muscles you can't use?
I am losing sleep over it as well, that is why I am curious about others with similar symptoms. I am trying to make the most of it and life my life.....but there is always that black cloud looming overhead!
 
Mark,

We all share that dastardly black cloud - Get yourself the baddest, biggest, boldest umbrella! Often, when I can't sleep - I count twitches instead of sheep. That and the Ativan solves that problem.

You are amongst friends here - But beware of Casey. A he's a wild and crazy guy!:roll::roll::roll:
 
Mark,
I remember exactly where you're at.
It's not fair for you to fastforward to whatever your individual progression may or may not be.
In my case I have had two strokes that may have affected my issues.
All I know is, I can kiss my wife, drink beer and eat beef tenderloin. No it's not the same, but life is what you make it.
 
Hi Mark,
I'm afraid that neuro was being honest. I so wish at times someone could tell us just what to expect and at other times I'm happy we don't know and just bumble along.

I remember in the months before diagnosis, my PALS fasciculations in his arms (he is bulbar onset) was increasing both in intensity and by spreading down til fingers were involved. I realised at some point that whilst they were worse at times, they were always there even when he was asleep. He had many months with not weakness, in fact he could out work any of our sons aged from 22 - 30. He had bulbar symptoms though.

They used to annoy him at times too but he did get used to them, and now not being able to use his arms at all is what annoys him! He started showing obvious atrophy in the hands and arms around 9 months ago. He has a lot of spasticity, and his hands are clawed, but he has enough movement in his thumbs and index fingers to operate the tv, electric bed and electric chair remotes, provided they are set up in his hands correctly.

That's just to give you an idea of how it has been for us, but other parts of him have progressed slower since fasciculations started showing up. So what has happened with his arms is not an indication of everything else for him.
 
I have bulbar and my first symptom was choking, I didn't even notice my tongue faculations, now there is nowhere that does not twitch, even my head, I have learned to ignore it, I did not realise that the twitching muscles would eventually weaken, it's been a year and I still have use of everything, my breathing and speach is going on me.
 
My onset was distal and slow. I started for twitches in 2010 and still have them. They're irritating but I don't think they are predictive. Hope that helps
Hollister
 
THANKS TEAM! Your responses are just what I needed...... just an idea of onset. Curiosity about how others with MND progress. I am so new at this and am still learning about it.
One thing I have learned is it SUCKS to be a "Jerry's Kid"!
 
Perhaps you did not read my thread.....it was clearly stated that my doc would not speculate, and gave me some abstract answer like 1-5 years.
I am a rookie on this forum, and apologize that my question did not warrant an answer.......

I suggest you lighten up some Mark. Your doctor would speculate but you expect others, without medical training and without even having seen you, to speculate? Yes this is a place to discuss. Speculation isn't information. 50% of us won't last 3 more years. 90% of us won't last 5. I'd say your doc was spot on.

And yes I did read your thread....and ask your doc for a more definite timeline although his guess is only slightly better than yours and far better than ours.

And as an aside, I would suggest that you might get more willingly given dialogue/responses etc. from the formum by not snapping at folks.
 
@ Media

Mark is just plain scared. I was/am like that too for a long time after diagnosis. Asked a ton of questions - some very silly questions. In my early days, HelenL (RIP), Sequoia(RIP) Ms. Pie, Cgars , Momap Alyoop, Sadiemae, Cervus, Mich5, Not me, Tokahfang, Brooksea and countless other PALS & CALS were particularly kind and ever patient with me. I am eternally grateful and I try to play it forward.
 
Mediasmart.....I only wanted to hear about others experience....not for them to diagnose or predict my future.
I suggest you LIGHTEN up. If you cannot be nice when others ask a simple question ....you should MIND YOUR OWN BUSINESS. I have contributed to this forum, and have done nothing wrong. Please ignore any future posts of mine!
 
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