Limb Onset ALS - How did it feel in your legs/hands

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Whitetiger

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Joined
Mar 10, 2011
Messages
38
Reason
DX UMND/PLS
Diagnosis
03/2012
Country
US
State
CO
City
Aurora
Hey All,

I have a question for any of you who could help me understand Limb Onset ALS. I know how it feels in my leg with slow, steady weakness & fatigue. I have trouble standing/walking for very long.

Can you tell me how it felt in your hands/arms when it spread to that part of your body?

Did you wake up one day and two fingers wouldn't work? Whole hand wouldn't work? Slow weakness starting in a few fingers spreading up your arm? Slowly losing your grip?

I know everyone is different, but I would love to hear your stories about how it happened for you. Thank you all for taking the time to share your stories hear. Please know it is appreciated!
 
We are the PLS forum, so cannot possibly answer that question. =)
 
Yea I put it in the wrong place. I realized it after I posted it. I don't now how to have it removed.
 
Just ask the right guy.

AL.
 
Her arms became very heavy feeling. Her shoulders slumped. She said she had a prickly feelings in her shoulders, kind of like when your foot falls asleep I was told. She still had normal use from the elbows down. Couldn't lift the jug of milk, etc. Just super heavy arms for about 6 months. Then her dex started going. Had a hard time with buttons. Could no longer tie her shoes or zip her zipper. Her arms started going about 2 years ago and has slowly progressed. Now she balances cutlery between fingers. Can not use a knife because no strength to cut. Can hold a half full coffee mug with both hands. That's our story and I'm sticking to it. :)
 
My PALS started with balance issues with his legs. He felt unsteady then he began having a lot of trouble getting up from a chair without help. Then came weakness in his right shoulder. He couldnt pick things up and just was getting tired very easy. The big thing that separated some of the other muscle problems is that his weakness was not symmetrical. The right side had much greater weakness than the left. He didn't really have any tingling issues in the beginning but fascillations came about the same time as the weakness.
 
My initial symptom was my right index finger. I couldn't lift it up, couldn't point. So puzzling at the time. I would just stare at it, trying to "will" it to work. Makes me laugh now at how ridiculous it was :) It quickly became my right index and middle finger (I couldn't give a peace sign!) and the weakness felt like it spread into the back of my hand and my wrist. That got me my initial work-up and diagnosis. A stupid finger = ALS at 27yo. Lame :p

Anyhow, I hear it different ways. Some peoples' limb symptoms start distal and move inward to the body, others start proximal going outward. My upper extremities started distally, but my lower extremities are showing more weakness in my quads and hips, but feet and ankles are still 5/5. It's the small things to be happy for really.
 
I originally had issues with my pinky(couldn't control fine movements), but strangely my thenar muscle was the real issue.It began (visibly) wasting away soon afterwards. I may have had drop foot before then, but my onset was so subtle and completely overlooked that no one ever noticed it.
I can still function normally for the most part, as it seems my progression is fairly slow. Probably has something to do with my age...
 
My symptom that sent the neurosurgeon and now the neuro on the diagnostic process to rule out ALS was first weakness followed by atrophy in my left hand. Atrophy has wasted the thenar and hypothenar eminence in both my hands--left worse than right. The weakness I experienced preceded the atrophy by several months. While this is apparently a common onset type of thing for ALS--it is also common for a LOT of other problems that can well be something other than ALS. There are several types of neuropathies that must be ruled out. The fasciculations in my hand weren't even noticed by me until I saw the atrophy. From 'weak' to nearly useless took a little over a year.
 
I started having weakness in one arm, I couldn't lift heavy objects. My hands were fine, and my legs. Then I fell off my bike and couldn't raise my arms fast enough to protect my face. I knew something was wrong then.

My shoulders have atrophied and now the joints of my hips are deteriorating kind of behind the joint, its hard to describe. I'm weaker overall and its getting harder to climb stairs. I definately can't run anymore.
 
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