Old 02-05-2008, 11:44 AM #1 (permalink)
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Default Limb onset - Weakness

It's been said over and over that all people who eventually are DX'd with ALS had different symptoms at different times. This makes it difficult for us "nervous nellies" (as I've seen us referred to), to try and determine if what is happening to us is or isn't ALS. So you might say "Go to a neurologist and find out". I did that and he said "I don't see any evidence of ALS "at this time, but if things change......". So I wonder if any PALs experienced the following symptoms in this order or a similar progression scenerio:

First symptom: Finger or thumb twitching.
Next symptom: Twitching elsewhere.
Next symptom: Fatigue in same arm that had the first symptom
By fatigue I mean the arm "feels" weaker than the other one. It gets
sore and tired quickly during normal use. Under heavy use it starts
However you are still able to accomplish the task at
Hand.

So I'm at this point right now and I guess I'm just a glotton for punishment. So I'm interested in knowing if this has happened to any PALS and if so was it a precursor to true weakness in that limb, How long did that take. Were you aware all along that this weakness was slowly developing or was it more of a sudden thing?

I was all for a BFS scenario until the perceived weakness started. Any info would be appreciated.

Thanks,

Dave.
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Old 02-05-2008, 03:07 PM #2 (permalink)
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Going by your age and history I'd believe the Neuro and go to Florida to relax for a week or 2.
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Old 02-05-2008, 03:17 PM #3 (permalink)
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Thanks Al
Actually, I'm driving a RYDER truck to Phoenix the weekend of Feb 16/17. Taking my 19 year old daughter to college (think $$). There's about six inches of snow on the ground here today. (Though, thats not going to impress a Canadian. ). Maybe it'll be nice out there.

I'm not sure about the age reference though. I'm 61, did you mean I'm about at the end of the line anyway so don't worry about it? I've considered that myself.
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Old 02-05-2008, 03:54 PM #4 (permalink)
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Yes I did mean at 61 things start to fall apart on their own even without any big diseases to speed up the process. It rained here last night and today is about 45 degrees but we're supposed to get a big? snowstorm tonight. Phoenix should be much better. Have a good trip.
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Old 02-05-2008, 06:00 PM #5 (permalink)
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Default Limb onset - Weakness

Hi Dave,

I am not an expert but my symptoms started very slowly over three years ago with transient weakness. I can't remember when the fasiculations started but I was ultimately diagnosed after about two years with a variant of progressive muscular atrophy. When you have this or something more benign is hard to say. It is not ALS, not fatal but doesn't have any good treatment options although a recent lithium study suggests it might help. That is if it helps ALS perhaps it will help with lower motor neuron disease. Have you seen a neuromuscular specialist?

I agree with Dave -- go to Phoenix and enjoy yourself. I don't know exactly when you are going but the weather should warm up in the next few days. We live about two hours north of Phoenix. Take care,
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Old 02-05-2008, 09:51 PM #6 (permalink)
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No, I've only seen a GP and a Neurologist. I'll seek a bona fide ALS clinic if/when I've got some more obvious and/or ominous symptoms. I'll post the results after that.


Thanks Mark and Al.

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Old 02-07-2008, 01:44 PM #7 (permalink)
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I'm not back. I just came by to see if you all had the Li study link posted (and of course you do). And then I got sucked into reading some posts.

I just want to point out that CFS, Cramp Fasciculation Syndrome, and BFS both include perceived weakness. CFS also includes muscle pain (not necessarily cramping), serious fatigue, and transient weakness.

Not giving any sort of diagnoses here. Just letting you know that perceived weakness and pain is nothing unusual for these two benign twitching conditions.

Now I'm gone again. Sure is great about the lithium. While they say they need to have bigger studies, those are some pretty definitive looking results to me. Now we just need to have a study that tries a cocktail of Rilutek, Lithium and IGF-1 or maybe just Creatine.

Have fun,

Paul
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