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Tired tongue

PostPosted: August 20th, 2014, 12:25 am
by TwitchyDoc
I just saw a post on the other forum and fits what I am experiencing last day - my tongue/jaws are getting terribly tired eating a meal that required a bit more chewing (meats, chocolate bars). I was eating one and afte a few seconds, my tongue felt really tired. It slowed down and I can barely do anything. I kept it relaxed for a while and it worked again.. But this really scared the heck out of me. I have had episodes of that in the past but this was the most severe one.
Having fasciculations even in this region (though not that clear) I can say that I am scared as I was when this all started :(

Re: Tired tongue

PostPosted: August 20th, 2014, 1:38 am
by Crampydr

I get that too, exactly as you descibe especially with chocolate - and I eat a fair bit of that.
I also have definite tongue twitches from time to time.
It's not much fun, but surely as you have had this for so long you are fine.
I'm sorry you're having a bad blip with your worry and I hope it passes soon.

Re: Tired tongue

PostPosted: August 20th, 2014, 1:41 am
by Crampydr
Ps. Stop looking at other forums!

Re: Tired tongue

PostPosted: August 20th, 2014, 6:22 pm
by Little Lost
Hello TD

Personally my own fear has changed how I process feelings my body has. ALS being a multisystem illness means that there is no area of the body that is safe from my constant fear, a weak hand, a weak finger, weak toe....nope now my throat. Etc....

Poor you here comes one of my silly analogies.

Imagine I had a phobia , a real fear of rabbits ( bear with me on this one). It is like me trying to take a photo of tiny rabbits on the side of a large hill. I start trying to look with my eyes, scanning the hill, but I only see small brown shapes which might or might not be hopping about. I tell myself to leave it at that and walk away....but I don't, I have to know, is it or isn't it a bloody awful rabbit.

So I use the camera and start to scan using the zoom. No rabbits, *beep* where are the rabbits.....ah I finally found one in the view finder. Didn't want to find it but it is there and now I know there are rabbits on that hill. Do I walk away, no I decide to look even closer, so against my better judgement I zoom in, and the rabbit gets bigger and bigger, and my fear grows and grows. Soon the rabbit is so magnified by my camera that in my vision it is now bigger than the hill.

My hand is sore with holding the camera and my eyes are strained from looking so hard. I am terrified not only have I found the rabbit, but it is super sized......I run to have a giant rabbit on the wee hill right next to my house what do I do....its going to kill me, a slow cruel death.......I show him my sore hand telling him the rabbit must have bitten me, and my eyes are burning from its laser eye death neurologist laughs....he says it is just a tiny brown rabbit on a hill miles from your house, even if it started hopping towards you its too far to ever reach you. It never bit you and although there is a lot of things we don't know about rabbits, we do know they don't have laser eyes.....( well 99.9% sure as we are doctors and can never say 100%). Your hand and eyes are just sore from holding the camera for giant rabbit, no lazer eyes..go home you are not being threatened or attacked by a killer rabbit.

So home I go and promise myself never to look at the little rabbit on the hill again....but did I see little brown hopping things on the village green on the way home....against all common sense I reach for the camera.

I know my story seems stupid but I am trying to say that ALS can cause a fear almost like a phobia. The fear can make me unknowingly scan my body for symptoms, (like looking for the rabbit on the hill). Once I find something I start to focus on it and the fear gets bigger and the symptom more pronounced ( the giant rabbit). Additionally by examining the symptom, I.e. sticking tongue out, tenting it etc it starts to get sore, weak..........then all hell breaks out and logic goes out the window...I can't convince myself the exasperation is because I over stretched the It has to be ALS ( I.e. in my story the rabbit but he and burned me with lasers).....logic lost, as they say if you hear hooves think horses not zebras, and certainly not giant rabbits with laser eyes.

There has been a lot of talk on the forum over the last few months about tongue fasciculations, and bulbar ALS. Do you think this has made a giant rabbit for you, I.e. made you focus on your throat and tongue. You give a lot of people advice and I know you research and answer a lot of PM from members. The downside for you is that you know a lot more about ALS than most, but that knowledge can sometimes come at a price. Reading and addressing something you yourself fear can be exhausting. I know you are a strong person, and seem logical, but hat doesn't mean you can't have your own fears. Truthfully ask yourself from a non bias point, is there a possibility these symptoms are related to simply over focusing on your tongue. Perhaps you are tired with it all.

If not is there anything physical you have done to your tongue. Some smokers who have moved to E cigarettes report tired tongues. Sorry to be rude but you could try kissing your partner see if your tongue gets tired when you not thinking about it. You can't think about ALS during those moments if you see what I mean.

Anyway my advice, little rabbits and e cigarettes is rubbish, but I am sure others will help out.


Re: Tired tongue

PostPosted: August 21st, 2014, 1:31 am
by TwitchyDoc
Little lost, thanks. I think it might be true - two days ago, I have got 9 PM to reply and it did takes its toll. I just cannot convince myself that a muscle easily tired could be anyhow linked to my mental/anxiety state.

Not many people reported symptom like that, that is why I am scared. If I a patient came to see me and told me "I have widespread fasciculations, tongue fasciculations and my tongue gets tired when I move food around my mouth", I would be 90% its ALS, 5% its SBMA and 5% something I do not know.

Re: Tired tongue

PostPosted: August 21st, 2014, 10:00 am
by mwagner
But, really after 7 years of twitching - would you still think in the 90%?

Re: Tired tongue

PostPosted: August 25th, 2014, 8:46 am
by Pascal35
TwitchyDoc you have been an inspiration for many of us here with similar symptoms... You mustn't give up!
You had so many tongue EMGs and you read so many articles and medical reports. ALS doesn't start like that!
If you can eat properly and move your tongue around your mouth quickly then there is nothing to worry about. Muscles get fatigued all the time.
I had my masseter muscles fatigued last week and i was in panic.
Eventually what had happened was that during my sleep i was grinding my teeth and obviously my muscles got tired...
I also have some tongue fascics which scare me a lot. Its on the same spot and come after i put some effort to my tongue and then try to relax it.
I am sure in a few days this tongue fatigue you are no feeling will disappear AND YES muscle fatigue is also stress related!

Re: Tired tongue

PostPosted: August 26th, 2014, 9:44 am
by TwitchyDoc
Thanks guys. It is true that during the last months I am terribly focused on my bulbar muscles - probably the most in the 7 years I have this ****.

But the feeling in the tongue/masseter muscles is real and while I know in the past some people reported tiredness in masseter muscles, I dont recall anyone reporting tired tongue when eating certain stuff.

Could I ask you a favor? Buy the chocolate bar Mars, eat it and focus a bit on the process. I used to eat in 4 bites, small ones do not cause issues of course. I asked a colleague and he said that when focused on the biting/moving around his mouth, he does notice some difficulties. I would be happy if someone could do that for me.


Re: Tired tongue

PostPosted: August 26th, 2014, 2:03 pm
by Ghayes420
I get the tired tongue feeling on several occasions. I used to get the sensation more toward the beginning of my BFS, but it comes and goes. It's not daily. Some days I don't notice it other days my tongue feels worn out and tired.
I don't know why you read the other forum. You must be stronger than the rest of us, which we know you are not. No offense there meant, just what I believe as fact. I would be curious to know if the tired tongue feeling this patient experienced came and went, waxed and waned over a three year period and they also passed a thorough neuro clinical examine for bulbar specifically after three years? My guess would be not even close to the same story.

Re: Tired tongue

PostPosted: August 26th, 2014, 2:35 pm
by elliottok
Just goes to show that this is as much of a mental illness as a physical one. If you can't stop this *beep* after 7 years and multiple EMGs, then I don't know what to tell you.

Re: Tired tongue

PostPosted: August 27th, 2014, 3:22 am
by TwitchyDoc
elliot, I did nto have multiple EMGs - I have had 2 in 7 years and an additional NVC which showed F-wave persistence of 50% (instead of 70-80) - a finding that is found in ALS. I did not want to deep digger and this was 2 years ago so I hope whatever is going on, it is very slow. I know bulbar is extremely rare under 50, it is more common in men and it extremely rarely present without dysartrhia - but I know also the other side, unfortunately. Being a neuropathologist definitely did not help.

Re: Tired tongue

PostPosted: August 27th, 2014, 7:45 am
by bobajojo

I'd just like to point out that you said "If I a patient came to see me and told me "I have widespread fasciculations, tongue fasciculations and my tongue gets tired when I move food around my mouth", I would be 90% its ALS, 5% its SBMA and 5% something I do not know."

I have all those symptoms. I struggled with a tired tongue for about 6 months. Based on your own description of your twitching, my tongue and widespread twitching is way more prevalent. Every minute of every day where as you told me on a bad day you'd get '20 per hour'. I get 20 per MINUTE on an AVERAGE day. You would have been dead wrong in my case. So I'm glad you're not a practicing neurologist.


P.S. Definition of 'multiple' = more than 1.

Re: Tired tongue

PostPosted: August 27th, 2014, 7:53 am
by TwitchyDoc
Matt, yes, hopefully - but I would not be wrong in majority of cases (+having EMG, of course).

So you too have this issue with the tongue? For me it seems to be the worst with substances like caramel/chocolate that stick to the teeth and the tongue seems to be tired of getting it off.

PS: I tried Trobalt and today I have had 2 series of fasciculations so far. If the hyperexcitability causes the vulnerability (as proven recently at Harvard Medical School), I will possibly take this drug as long as possible.

Re: Tired tongue

PostPosted: August 27th, 2014, 8:54 am
by bobajojo

You have to stop saying things like this. Yes, you would be wrong in the majority of cases. The mayo clinic was uninterested in my bodywide fasciculations and tongue fasciculations. A tired tongue is much different than a clinically weak tongue. "Tired tongue" has been brought up by many many BFSers on here, the facebook page, and the chat site. You'd have been wrong in ALL of those cases.


Re: Tired tongue

PostPosted: August 27th, 2014, 9:19 am
by TwitchyDoc
Matt, I was unable to find anything about tongue tiredness here on this board. Never heard you had it. The thing is, in my case it is sometimes so bad that I have to rest the tongue for a few seconds in order to continue.