The "FALSE" association between ALS and "twitching"

[Jghallis]

Hello all, I am new here and have been searching the site for the past month or so. What brought me here is the same thing that has brought most of you all here. About 2 months ago I started having constant twitches in both calves, along with random twitches everywhere else. Well, the internet convinced me that I was dying of ALS before I found this site and others that allowed me to educate myself about BFS. Over the past month I have come to realize something that may or may not be obvious to all. Those who have BFS and worry about ALS are creating a false association between Twitching and ALS. What do I mean by that? A muscle twitch or a series of constant twitching, that isn't accompanied by clinical weakness, Atrophy, or a negative EMG, is as indicative of ALS as diarrhea is indicative of Stomach cancer or forgetting where you left your keys is indicative of having a Brain tumor. I forget stuff everyday! I have the squirts at least once a month! Does my mind automatically race to cancer of the stomach or brain? Of course not. Well, its equally as foolish and irrational for us to let our minds race to ALS when we twitch. I have come to realize that Twitching is not only common but its most likely universal. Every single person I have asked about twitching has told me they have twitches. Every single one! People with ALS twitch because their muscles are dying. By the time they notice the first fascic, there is already other CLEAR signs that something is wrong in that muscle that is twitching. Its weak, its shrinking, and becomes less responsive day to day. If your muscles that twitch isn't doing this, then you do not have ALS. You don't. And for those of you who have actually gotten an EMG and its come back clean, your next appointment needs to be made with a Psychiatrist. I have a good friend who is an EMG specialist and has been for 5 years. He does all the EMG's for 4 different Neuro's in our area. He told me unequivocally that ALS will show up on an EMG 100% of the time long before fascics appear or even weakness presents itself. He also told me that in 5 years, and after performing thousands of EMG's, he has never seen one ALS diagnosis! But yet almost ever patient he tests, has Fasciculations! The issue here is we have allowed ourselves to create a false association between ALS and Twitching. Benign Fasciculations and the Fasciculations present with ALS are NOT the same thing, are not part of the same pathology, and are not caused by the same mechanism. The only thing they have in common is that some researcher somewhere long ago labeled all muscle twitches with the same word- Fasciculations. Also, consider this as well. Because BFS is so common, the chances that some ALS patients have BFS as well is pretty high! This would explain why some ALS suffers reference twitching as one of their first "signs", when in fact there is a significant chance that they were experiencing twitches that had absolutely zero to do with the disease that was about to onset. Statistically alone I would be very surprised if a large number of ALS patients didn't have benign twitches throughout their lives even though those twitch are completely UNRELATTED to the MND they developed later on. If I am off base here than please forgive me but I don't think I am. If your muscles that twitch arent weakening and atrophying then these twitches are not due to ALS. If this isn't good enough, along with a clean EMG and neuro exam, then its time to see a shrink.

[buddyroxy]

What a good rational point of view you have. Thanks for posting

[MarioMangler]

I think you are dead on and I wish this message was repeated more often on this board. Twitching is not a symptom of ALS. I think if we sort of went back to that simple message more often it would cure a lot of the anxiety around here. It's really kind of silly to think you have ALS if you don't actually have any ALS symptoms. I mean, step back and look at that for a second. The problem isn't BFS at that point, the problem when you make that sort of a 100% correlation in your mind is your thought process.

I think it would help a lot of people around here to take a step back from your obsession and think about this logically for a second.

[Xina535]

I really like your post and agree.

"the squirts"....nice.

I wish that websites and resources that describe ALS need to be more careful about wording stuff.

Example, I saw a trailer the other day, of that movie with Hilary Swank, "You're not You" or something like that. It showed her playing the piano all nice and lovely, then a title comes along and says, "Then one day, everything changes..." and then they show her sitting at the piano, worried, looking down at her thumb, and her thumb (thenar) is twitching. To me this is depicting twitching as one of the first signs. I knew from that, that I will not see that movie.

[Yuliasir]

haha my thumbs are twitching for many years already and I was used to have a look at them in a kind of amusement first ))

I wonder how they made her finger twitch (I assume this was an actress?)

Twitching seems to be so dramatic! So much effect! How else the spectator might feel that there is smothing wrong? How one can play that extremely amuzing feeling which many real ALS people describe - that complete feeling of USELESSNES - they say that thay can see their limbs and efen feel them (as sensory nerves and propriception are not affected) but can not use them, and this was really like... like a shock. I think good actor can play that - but twitching is more dramatic ))

[Xina535]

they probably had some sort of prosthetic on her thumb.

this is the trailer I saw - it happens at the 50 sec. timepoint. followed by "One moment can change everything"

http://www.youtube.com/watch?v=SE0m-N-b1VA


so the one moment she sees the twitch in her thumb, changes everything. that is what I got from that preview. the movie may be different like she was struggling prior to that "one moment" but...c'mon!!! Give us BFSers a LITTLE BREAK!

[leaflea]

Okay Christina, I just looked at this "you're not you" movie based on a book. I have decided the author is likely a bfs sufferer! Come out, come out whoever you are! I think we have a famous author here, maybe the same gal who writes on yahoo about bfs.

[veryworried123]

Good post

[veryworried123]

good post

I don't disagree in simplicity however you are dealing with people here who are not only very bright but also very persistent

and what's more i think the real key here is also the fact that people just continue to twitch and that in itself is a reminder (for me hundreds to thousands) of times a day that something might be wrong and that where all this research and discussion comes in...think about it. if the twitching would stop or decrease by 90% you probably would be able to move on

[Xina535]

If twitching stopped 90%....

Very true for me. There were times, which I even posted about on here, when my twitching died way down and that was when I felt the most free. It came back, some hot spots, and I'm a nervous wreck again.

[Jghallis]

I still twitch as much today as when it started back in August. I agree that there is definitely a link between twitchers and intelligence. I think that is due to the analytical nature of high Intel people. And being an analytical person often leads to being over analytical which often leads to stress and anxiety.

I'm convinced that BFS, in most cases, is caused by anxiety. I think people too often dismiss this but when you understand the physiological mechanisms that anxiety set in motion then it becomes clear that the are linked. As has been documented on this site in other posts, when we experience anxiety, stress, or fear, our brain signals for the release of adrenalin. This is part of the fight or flight mechanism. As we have evolved, we have developed the ability to escape danger by either fighting our way out of it, or quickly escaping it. The thing that allows us to go from completely normal to all out Rambo mode is adrenalin. Adrenalin is a good thing that helps us deal with dangerous situations but it can also do a lot of harm to our bodies if we live in a constant state of abnormally high adrenal levels. When we are overcome with stress or anxiety, our body releases adrenalin. Our body is constantly in fight or flight. Because of this, our muscles are constantly getting signals from our brain to wake up, move, jump, run, escape, punch, kick, fight, etc. However, our mind overrides these signals because rationally we know we aren't in imminent danger. As a result, instead of our muscles totally responding to fight or flight and springing into full action, they just........twitch. Especially the calves. Twitch twitch twitch. They just twitch. It's like flipping the switch to your garbage disposal and just hearing it ***hum***because something is stuck in the impeller and preventing it from turning. Adrenalin is the switch, the impeller trying to rotate is the fight or flight response, the object that is stuck that is preventing the impellor from turn is our rational override, and the hum- guess what that is? That is the twitch that is caused by the whole process. Garbage disposals hum but don't turn and human being twitch but don't fight or flight. And overtime, the high levels of adrenalin caused by stress erode the seratonin levels in our brains which leads to depression, more stress, and more anxiety which causes more twitching. Sometimes we are able to calm ourselves down long enough for our adrenalin levels to subside and our seratonin levels to rise back up. This can take weeks or months to occur. Sometimes years. It doesn't happen overnight. But once it does, we will begin to notice that the twitches start to become less noticeable, and then sometimes they stop! But guess what? As soon as we get over anxious again, or really stressed out, here comes the adrenalin, the cortisol, and the twitches are back.

I hope this helps someone. It has helped me.

[leaflea]

Jghallis -- where have you been all my life! I love your two posts, please post more. You are so right on! I'm no genius, but I scored like a savant on the analytical portion of the SAT 30 years ago. I believe the constant adrenaline caused by a nasty virus or long tern stressor actually damages some kind of channels whether calcium, sodium or potassium causing the twitches. This creates a pathway - think of a pathway through a field of tall grass - whereby when stress returns this is the natural pathway the body will take. It will take a long time to form a new path, but with work and tenacity it can be done.

[Nytviolet]

Problem here is that (although I've had twitching 18 years) I'm losing muscle in left ankle and calf, and it's noticeably weaker. Not to the point of foot drop, but I could stand on my RIGHT FOOT ALL DAY. The left foot for maybe 15 seconds before I start to lose balance. I've posted on here before that all fascics are worse on my left and seem to be more intense (almost constant buzzing in left foot and leg). Was recently told I have small fiber neuropathy but I doubt it explains everything (also DECREASED reflexes). I've never had EMG and (unless I begin to trip or drop things frequently, I see no point because even if mildly abnormal, I'd be torturing myself).

So if twitching is your ONLY issue, thank God and be delighted. Wish it were my only problem.

[Nytviolet]

Just returned to my last post almost two years later. It's weirdly comforting to see I was worrying about the SAME EXACT problems in Nune 2015, and I'm still fully functional. I have some atrophy in left inner foot (abductor ____) left calf and nonstop humming in that foot (also occasionally the right foot). Glad I revisited. Perhaps it's the SFN I was diagnosed with? I'm glucose intolerant but not diabetic. Oddly, many PRE-diabetics have similar symptoms. In case anyone is interested, my twitches began in 1996 so it's over 20 years now.