Questions about fasiculations

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price2001

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What do fasciculations feel like? Do they last a long time (seconds) or are they quick (less than a second). I think I have them but I want to be sure. And what about large twitches that move your body (like the ones you get when you're about to fall asleep) . . . are those signs of ALS too?
 

ccox

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Hello and welcome,
Be sure to check out the "Do I have ALS" part of the forums. At the top there are two posts that are always there that will answer many, many of your questions and worried.
Take care
 

Omar

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Hey Price 2001,

My fasciculations are quick in general and very very quick when I am sleeping, they are all the time and so far I have got used to them especially in day time where I am not aware anymore that they exists. As I have read a lot about ALS, it seems that fasciculations is not only a sign for ALS and could be also related to other diseases.
 

androgel1970

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To Omar

Thank you.

I'm not sure if you know my story, but it all started about a month ago for me. I got mild weakness in one arm, then mild weaknesss in the other arm about 2 weeks later (not nearly as bad) and then mild weakness to both of my legs days after that (so all of this in a matter of about 3 weeks). Does that sound like ALS? I have very, very few fasics and I've always gotten them (probably for nearly 20 years . . . I'm 41 years old) and got them when I was tired and stressed, which I most definitely am at the moment. I have convinced myself I have ALS because I just don't know what else this could be. Do you have any insight? Again, my weakness is very mild, but definitely there.
 

niteangel2

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Hi all. I lurk around daily. I love to see what Al is posting, but as far as I know I don't have ALS. I have, however, done 100's of hours of research on this subject and seen a doctor.

I don't pretend for one second to know what some members on here know, but wanted to let you know some things doctors have told me.

I started twitching all over my body one day at work and I have been twitching daily for over 4 months (which is why I found this site), and muscle twitches alone do not indicate ALS. Weakness is 'normally' the first calling card of this horrible disease. There is a much, much bigger chance of twitching being caused by something other than ALS.

Also, perceived weakness is not the same thing as clinical weakness. Feeling like your arms are tired is not the same thing as not being able to hold a pen. My dr told me, "If you had clinical weakness you'd know it. You wouldn't have to describe it to me, because I'd see it, too.." My weakness came on quickly too. That also is not the norm for ALS.

Since I've been typing this I've had twitches in my right thigh, left calf, left foot, eyelid, and my butt. My legs felt weak today, but I went grocery shopping, got down on my knees and cleaned baseboards, and helped my hubby with yard work.

My point is, if I had ALS I couldn't do this. Weakness would be weakness. Please don't torture yourself with possibilities (that are pretty unlikely btw) and spend months glued to the internet looking up symptoms and then convincing yourself you have them like I did.

By all means go to the doctor and have everything checked out - and when they tell you that you're fine, believe them!
 

wright

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To nightangel2

Thank you immensely for trying to calm my fears. However, when you talk about weakness, it has to start somewhere, right? Do ALS patients go from one day, being able-bodied . . . to the next day, not being able to hold a pen, etc.? That is what has me scared . . . am I in the beginning stages. My weakness is not clinical . . . I can still type, hold a pen, button my shirt, etc. . . . but I am definitely weaker than I was just a month ago.
Another question for you: when it comes to fasciculations and weakness, are they bad only when you are clinically weak or when you have mild, "perceived" weakness. Again, I know my body very well and ALS was the furthest thing from my mind when I found that I got weak in my arm.
Thanks again for taking the time to write to me.
 

Omar

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Hey Guys,

So far I have heard of people who have been living for more than 15 years with ALS as well as people who have lived only for 3 months with it so it seems that it may be so slow and very very fast.
Some people also get diagnosed right away and with others it takes up to a year and even more.
I don't know, it is just very different from a person to another.
 

Tall John

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To Wright and Omar

My weakness crept up on me, slowly noticed something amiss. I also think I am a relatively slow progressor.

ALS tends to be linear, i.e. the speed with which your first symptoms show up will dictate speed of progression.
 

wright

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To TallJohn

Well you knew I was going to ask: could you define "slowly crept up on you." Did you initially present with "perceived" mild weakness, like me? If so, did you have your fasciculations during your percieved weakness? If not, when did you start to have them? It just seems that if you have weakness with fasics, people assume it's ALS . . . or at least . . . I do. One more question: if I get a NCV/EMG test in a couple of weeks and it's "clean" . . . would that be reassuring to me?
Just as an added note: you have a very calming, reassuring, almost "fatherly" sense to you . . . which is strange, considering we're probably about the same age. Anyway, I just want to thank you for your comments.
 

nikk

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I'm confused because Price2001 answered with another name androgel1970 and then even another, wright. i have seen this in several of price2001 posts. these are some of the worries i have about internet forums
 

androgel1970

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I apologize

Hello . . . this is androgel1970. I must apologize, because I'm new on here and sometimes when I go to a thread, I forget which thread I'm on. So if someone poses a question, I answer it if it was posed to me, thinking it is my thread. I'm not sure about the other people you mentioned, but that is what happened in my case.
 

Tall John

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To Wright

Got fascics May 05, noticed slight left hand weakness in gym early Dec 05, thought I needed to work my forearm muscles more. By end Dec I knew I could not open and close my hand as fast as before.

If you get a clean NCV, I can't see how you could have ALS.
 

Tall John

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To Wright again

You get the fatherly thing when you've had 3 EMG's, want to believe you can't have ALS, do 3 rounds of Ivig and after a year and a half you get that tell-tale slur, that even you yourself can diagnose.
 

wright

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Hey TallJohn

So you started with limb-onset and then it went to bulbar? Did the condition in your hand / arm get worse as time went on . . . and then you got bulbar . . . or did your hand weakness stay the same and then you started with bulbar systems? You said you are a slow-progressor. How quickly would a "normal" progressor show symptoms?

What is Ivig? Is it a treatment for something else they thought you had?
 

olly

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ive had progresive weakness for 8yrs. this has been noticed by my neuro and pysio therapist.i have limb girdle weakness including a weak hip and past 2 month my shoulders are going and i find it difficult to reach for things . i was told 1yr ago ive developed hypotoia(loss of muscle tone)which is bad and i did not realised it. so only a neuro exam can tell true weakness
 
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