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[Woody2014]

I read the "Sticky" here but can find things online that dispute some of its information. For example, I've read threads on this forum where PALS discuss having fasciculations, even widespread, before the presence of any weakness. I didn't think it was even possible to have widespread ALS fascics before the disease is widespread? Doesn't it typically appear in one area and spread to others?

I've been having widespread fasciculations for a few weeks now. I have not visited a neurologist but did see my doctor recently. He said I wasn't exhibiting any signs of concern.

My stress level rises though with each twitch. They seem far worse in the evening. I'll feel one in my left upper arm, then a few minutes later in my right knee, up to my right arm or left calf or pretty much everywhere with no pattern. Was this common for anyone else? I'm not sure what course to take.

Thanks for your thoughts.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


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Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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[Atsugi]

I see lists of symptoms on various internet sites, too, that list twitches as a first sign. I think those lists do their best to list every remote possibility so as not miss anything that anyone might experience.

The stickies here are written by real ALS patients, and only ALS patients.

I have twitches. My face, back, and arms, especially my legs. I have had them for years. But I don't have ALS. (My wife did.) I figure it's just the way a person's nervous system ages over the years. There's bound to be some imperfections after a while.

There are many "signs" of ALS. If your doctor saw nothing of concern, believe her.