Page 2 of 2

Re: Tired tongue

PostPosted: August 27th, 2014, 9:43 am
by bobajojo

I want to help you with your anxiety, but after 7 years of different complaints, I'm losing hope that your anxiety can be cured by members of this board.

Just because I didn't write a post about my tired tongue doesn't mean I didn't have it. I had to do the same thing with my tongue. Once I stopped focusing on my tongue, my tongue started to feel normal again. But like I said, it was 6 months later.

I would encourage you to go back and read your own posts. Look how anxious you were back in 2009, 2010, and look how convinced you were that something was seriously wrong with you. Remember the hand atrophy from 2 years ago? How did those symptoms turn out? This new symptom will be the same. From someone who has followed your posts since the beginning, it is hard to read what you write now because you are such a clear case of anxiety and half the things you write just aren't true and only cause more anxiety to those who read it (like when you just said that widespread fascics + tongue twitches + tired tongue = MND). In the very beginning, I never worried about my tongue. But then I followed your panic about your own tongue and I saw your name "TwitchyDoc" and figured you were a practicing neurologist. So guess what happened next? My own tongue started twitching and I went off the deep end. I personally think its unfortunate that your job enables you to remain focused on neurological symptoms. I really hope you find some peace and ultimately realize that these things can absolutely be nothing.


Re: Tired tongue

PostPosted: August 27th, 2014, 9:52 am
by TwitchyDoc
Yes, actually I really hope this is the case and I do read my old posts. What worries me is the decreased F-Wave in my right hand (as I said, typical finding in early ALS) so I am much more sensitive to any new symptoms. I feel there is something slowly moving as I notice more symptoms that are hard to attribute to something else. I am on Rivotril, Serlift (SSRI) but it does not really help if the fear is rational. As for my hand atrophy - it has not change since, yet the neurologist keeps his eye on it.

As for my nickname, a lot of members do not know that it was supposed to be "TwitchyDocen" as in my language, we do not say "doctor" - though as a neuropathologist I am one...this nickname is unfortunate (could be change..Gary?).

Re: Tired tongue

PostPosted: August 27th, 2014, 11:31 am
by Andreas

I have the same with my masseter. Sometimes i´m unable to eat a dried raw sausage. After a few bites a have to give up due to my masseter aches after that. The same with swollowing. Sometimes I have the feeling that my swallowing-act takes much more time than normal and that I can´t swolloing as fast as I normal can do. But for me it changes ofter from good to bad but it can also be bad for a Long period of time.

I hope that helps you!


Re: Tired tongue

PostPosted: August 28th, 2014, 1:17 am
by TwitchyDoc

Yes, masseter muscle tiredness/pain (extending to m.temporalis) is also bothering. Chewing a bagette? Difficult and in a while I feel as if there was no strenght anymore and the muscles get achy.

Re: Tired tongue

PostPosted: September 5th, 2014, 5:27 pm
by Neville86
Sorry, said I was going to leave for a bit but I have to say something after reading this post.

I just have to say I agree with Matt on this one, Docen. You've got to do something about your anxiety, because in the meantime you are like a claymore mine. Unlike everybody else here who freaks out, when you freak out you always manage to give us all this info ABOUT WHY you are afraid--stuff we had no interest in learning to begin with. I told you in PM, I dropped out of medical school for a few reasons, one being that I realized quickly that I didn't want to know the ins and out of this kind of stuff. I still don't.

I think your heart may be in the right place, but just be careful. I wonder sometimes where this tongue twitch of mine would be if I hadn't come on this board. I remember seeing it that day for the first time and thinking "I've seen this before, a long long time ago, haven't I? Let me just go on Google and double check make sure it's nothing." I stumbled across this website and read a post by you about how tongue fasciculations are never benign (something you had read), couple this with the fact that you were some kind of doctor and I was done. That was two months and a week ago. I can't get that time back.

Be less of a frag grenade when you're anxious. I personally don't want to hear about how ALS starts this way or that way or whatever because for the most part (except for three people on this forum) ALS has nothing to do with the people here.

Two months ago my tongue was so cute. Fat and silent and, just so *beep* cute. Surface was like a cute little forest of papillae where all the bacteria slept and had little families of 2.5 and white fences.

Now, two months later and plenty of knowledge and anxiety my tongue looks something like this:
Can someone link me to the Facebook page?

Re: Tired tongue

PostPosted: October 7th, 2014, 3:10 am
by Brummer
Hi TwitchyDoc,
I hope you remember me because we talked about this tongue stuff a few month ago. I have bodywide fasciculations, also found by EMG, since 9 years and this tongue stuff started a few years after. I think with the same intensity like Bobajojos. I had several EMGs on the tongue in several clinical centers and I experience the same thing you do now from time to time. If I focus on that I feel the tireness too. A few years ago I practised to much with my tongue that I could´t move it anymore. So the point is not to focus on it. I know that the fasciculation will never go away because it is lasting too long. But nothing bad ever happened to me because of it. It is just the fear that makes our lives this much hard.

Re: Tired tongue

PostPosted: October 13th, 2014, 8:32 pm
by Antologia
I have this also, I notice the tired tongue the most while eating pancakes, but also other food. I do not eat chocolate bars :-) My jaw also feels tired when I'm brushing my teeth. Can't open my mouth too long. I rest and then I go on. I have this for more then one year now. I also experience tired arms when doing something above my head. Quicker then other people. This is how it all started by the way, with those tired arms. I have that 15 years. Twitching started 13 years later.

I also have tongue twitches by the way. The 'bag of worms' which I can see, but not feel and the twitches like I feel in the rest of my body. The tongue twitches started 1 year after the bodywide twitches.

I had an EMG at january 2013 which showed nothing.

I keep wondering what it is, but I'm always kind of happy that there are more people with the same things I have.... Maybe it's just a disease nobody knows about yet? Because it develops so slow? And it doesn't kill you?