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ALSBurger

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It's been bothering me because the main BFS site plainly states that if you have muscle twitching with no weakness or generalized fatigue, then you do not have ALS.

And that ALS does not begin with muscle twitching by itself, but in fact the twitching comes after atrophy and weakness has been going on for awhile.

Additionally they state that if your twitches are larger muscle groups with obvious visual appearance, there's no way its ALS because ALS is primarily tiny, micro spasms that are usually not involving major muscle groups.

I believe all three of these statements to be completely false, yet they are the premise upon which the BFS site informs its members.

thoughts?
 
I want to comment that it has been users *here* on this site who have repeatedly stated that they had twitching before any atrophy or weakness, so that is the only reason I am questioning this. Members here who are diagnosed with ALS said this was their experience.
 
You must understand the difference between benign twitches and those caused by muscle death. Some here did in fact have twitching all over.

The fasciculations seen in ALS are seen most usually when the muscle is dying, per my neuro, and at first, it's a small group that first begin the process. Fasciculations that concern physicians are those that are accompanied by weakness when they do their clinical exam.

And even then, it doesn't mean ALS.there can be other causes for nerve death in a region. But widespread twitches with no muscle weakness are almost always from a totally benign cause.

Another cause are deficiencies in things like potassium or B-12.

Just because someone with ALS may have had twitches all over, it doesn't necessarily mean it was related to their ultimate ALS

Some her with ALS also smoked, or we're in the service, or were given an injection or thought they had Lyme disease. My point is that because someone had it, doesn't mean it was an ALS symptom.

The very small fasciculations in my left hand I could see when I looked at it, I couldn't feel them. The hand had already lost a substantial amount of strength. The neuro spotted the ones on the right.

My legs get what I call jumpers. I can both see and feel them, but in my legs, there is spasticity and hypertonia a d pathological reflexes like Babinski and clonus.

Oh, and what disease do I have? Your guess is as good as mine. I've lost the use of most of my left hand, the entire arm is inches smaller now visibly. The right is now weaker and the atrophy first noted a year ago is progressing.

Fasciculations inland of themselves without other accompanying signs and symptoms found on exam are not clinically significant.
 
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I had a probable diagnosis in 2009 and I didn't even the notice the twitches. My GP noticed the twitches in a general physical, in addition to an extraordinarily high CPK 3blood value . I have had weakness long before that and muscle spasms long before that. One of the problems is that none of us are typical, it is a complex diagnosis, and as we used to say in the medical business, what we call the guys that graduated in the bottom third of their medical class? We still call them Dr. so an ALS specialist is important. My neurologist at the ALS clinic really thought 2009 that I had ALS but because the EMG was still clean he didn't say anything. I certainly respect that because we don't have any treatment or cure at all that would've caused was tremendous anxiety. Once he had the dirty EMG, about a year ago, he gave me the final diagnosis.
 
I have widespread fasciculations, both observed by myself and detected on my last EMG, but these didn't begin until I started noticing weakness. I most likely have some kind of myopathy (muscle disease) or, less likely, a slowly progressive motor neuron disease. I'll probably know for sure after my muscle biopsy this month. The point is, I'm agreeing with the others -- fasciculations with no weakness doesn't seem to be much cause for concern, and even though I've got both fasciculations and weakness, I still may not have ALS, so there's always potential for it to be something else. Good luck.
 
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Thanks for helping me "Get a clue" .

And why are my posts being moderated now? Geez ...
 
ALS Burger, certain words or phrases automatically trigger a trip to the moderator. Posting links will send it to the moderator as well.
 
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