Twitching and ALS: Clarifying Facts

[Onewaylife4u2]

Hello eveyone, long time no post. I just wanted to see if we could all pool our knowledge and clarify something here. I have heard many many times that twitching in ALS stays in the affected muscle(s) and does not stop until the muscle is dead and unusable. I have also seen many other people who tend to say this as well but they all seem to say along with it that "that is their understanding" or "they think they heard." So can anyone one here clarify that they have specifically heard or read this from a neurologist or otherwise qualified profesional and any other details that went along with it? I mean it almost seems to good to be true, but it does make sense. Anyone??Thanks!

 

[onesMJonesy]

The only qualification I have is that my mum is an ALS patient. I know from discussions with her neurologist and the MND Association here in Australia that this is true. The fasciculations continue non stop until the muscle is dead and unusable. As an example my mums tongue doesn't work properly. Her tongue fasciculates non stop. It never lets up poor thing. I've seen it. I hope this helps!CheersMaria

 

[Chris2]

Hi, I have noticed that when i visit a nero and lets just say I've visisted and revisited many this is what they seem to think. First of all they dont give the twitching much play during your visit. It has not been the main symthom of my visit with them as much as i tried to make it (by obsessively talking about the style and type and duration of the twitch) they are not that interested in it. They seem to be more observant of other things like clinical and strength tests. Only two of the six neros even anserwed me at all about my twitching and both have said the same thing "in als when a musle starts faciculating it does not stop until it dies" then they like to add "als patients dont even know that they are faciulating half of the time. (but this is not the same as seen but not felt benign twitches that we all get) (that seems to be a concern of late on this board. The neros said this to me to show me that in als there is such bigger more exagerated things happening that twitching is not top priority for the patients. But ofcoarse in bfs it is.

 

[inzTwoToneTunes]

From what all my neuro's have said twitching in als is the result of dying/disconnected muscles that are sending a "signal" (twitching) back to the nervous system asking for more supply. Eventually the muscle has no more strength left to send out its distress signal and stops. Not because it wants to but because it can't. The hallmark sign of bfs twiching vs als twitching is that bfs is more widespred and inconsistant. Here, there, then somewhere else.Bfs twitching is irratated nerves. Not dying nerves. DD

 

[Onewaylife4u2]

Chris2 - Thanks that would seem to be pretty clear. It just seems like that's almost too good to be true though. Why isn't that emphasized more on here? To ALL the people who twitch in a certain spot only "every now and then" wouldn't that line of logic effective show that there twitching is not ALS related?Double D- Yeah that's true, but I suppose that benign twitching could also be more isolated as well, even for long periods of time (hotspots). For instance, I had a spot on my foot, a specific spot, that twitched for a month, but the thing is, it stopped and it hasn't hardly twitched at all in the last 6 months, plus there is no weakness there. So I was just trying to figure out, if that was enough to effectively show that the twitching I had there wasn't ALS related.

 

[PeoplesoftPC]

Hi, I think you've hit the nail on the head. The key difference is massive good news, yeah almost too good to be true as you say! I think it is emphasised here - in the 'nutshell' sticky and in many old posts too, but it can't be repeated enough times. I think we all need to hold that rule in our heads to keep our fears away!

 

[Chris2]

about 2 weeks ago i had a very intense hot spot in my right shoulder. It was perfect for me to show everyone (so i did)......my hubby kids........mother in law and friends..........It was extremely visable and sought of an affirmation to show people that although i dont talk about it much any more( just look at what i am still going through after two years) and they all had that same reaction (wow) thats incredible they said. How do you stand it. Well, this is how...........i have no f......ing choice it wont stop............ its not my fault ............ But now lets talk about the hot spot. Its totally gone....so logically i shold say.........all day long for about 2 weeks constant twitching in shoulder and now nothing...........I am as strong as ever.................so no more hot spot just random twitching in other places...............so thats definitely not al.........But the hold this thing has on us is more complicated then that and it doesnt reason well. We know the facts.........go the the neros and yet still manage to think(well Maybe) its part of this phenomenon of bfs. It doest let you be reasonalbe all the time. Because its really too freaky and has that stupid link (goggle induced.....to al........) just because of the word "twitch" we have given that word too much power. It is what it is and is not what its not.......................Lets free ourselves............no more unreasonable power

 

[paulrational]

My calves, feet ,ankles and hands have been constantly twitching for the past 6 years,never ever stopping.So me being a perfect example to either disprove the BFS theory of twitching that, the ones that come and go are benign,or the constant ones are ALS therefore meaning BFS in a nut shell is a load of old Tosh.You see there is no other way things can be unless i am that one in a million, and the first person to fasciculate constantly for 6 years without weakness,Atrophy ,clean EMG/NCS and still have ALS - in the history of medicine.Although this site is great it can be a dog some times too.

 

[paulrational]

So y do some of think we have it? because our symtoms contradict posts like this.