Seeking Reassurance: Twitching since Feb

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EnlgishBirder

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Hi, I was reluctant to post given that I've had quite a few different symptoms lately and I reckon people think I'm a bit crazy. Anyway if anyone out there has had these symptoms I'd be grateful of some reassurance as I'm feeling miserable.I've been twitching since Feb 13. Saw a neuro in September, October and a week or so ago. He says no issues and no need to do an EMG (hes a specialist in MND)My big worry however is my mouth. I've always had chronic throat clearing but recently I've had bouts of excess saliva and now most worryingly my tongue for the last 2 weeks has felt thick and when I talk I think I'm slurring or mispronouncing some words. It's especially "th" and "s". No one else notices but I've read people who know you won't always notice. I've also looked at my tongue. When the neuro saw it briefly he said no twitching but he asked me to stick it out. If I rest it on my tongue it quivers and I find it really hard to keep still on the floor of my mouth. If I look at rest it looks normal with no twitches for about 3 seconds and then it starts pinging but I'm sure it's because I've moved it only a tiny bit. Would this be the case? Would even the tiniest movement cause it to look like it's twitching? Otherwise I'm doomed :(Is it obvious if it is fasciculating in *** ie are the twitches very pronounced? When my tongue is still there are none but it really doesn't take much movement for it to look like it is.I've had a clear clinical but what's terrifying me is that there is no test other than EMG for bulbar. Just looking at me is not going to put me in the clear and as the neuro hardly bothered with my mouth how would he know? He said my speech was fine and I needed to relax as I was speaking very fast.Has anyone else had these problems? My tongue feels awful and I'm starting to not want to speak. Chewing and swallowing are fine but I've read speech is affected first.Thanks
 
I'm sorry you're having a setback. I hope I can offer some reassurance.Everyone's tongue "quivers" or shakes if you will. I forgot the reason why, but it is IMPOSSIBLE to hold it still. One of my neuros told me this years ago when I was freaked out for the same reson. Those aren't twitches, it's just the tongue muscle shaking, which for everyone is normal. Also, bulbar is so rare, and so rapidly progressing, that it's hard to miss. You and those around you would know. If you mispronounce a word yet can say it correctly the second time, that's not bulbar. If you can say mamama and kakaka, and raise your soft palate to swallow liquids, it's not bulbar. It sounds like pure anxiety that is causing your symptoms. I hope this helps!
 
Also someone posted about this a few weeks ago, I think it's called "so scared! Does this look like Bulbar als tongue twitching?" And she even posted a video about what she thought were tongue twitches. twitchy doc and others reassured her it was not.
 
Thanks Emmie, What's making me really anxious is the feeling of thickness in my tongue and how I feel I'm having problems forming some words. It's like my mouth isn't working properly and feels really heavy.
 
Many here have reported that same thick, awkward feeling. Remember that ALS weakness is not a "feeling" but rather a state of being. Either you are noticeably slurring your words and choking on your food or you're not. Can you contact your neurologist to get peace of mind, such as with a phone call? If you don't feel like you can trust the diagnoses of your skilled neurology specialist, then perhaps you should see another one that you trust. Please take care, and try to think positive.
 
I don't think these are tongue twitches. I have the same as you describe. Was worried that it was tongue twitching, but asked my husband and he has it even worse then I have (and he doesn't twitch). I do have the excessive saliva. This worries me too. It gets worst after I eat something sweet and I need to suck my saliva to the back of my mouth all the time, because it stays right behind my teeth. Just like I'm not able to swallow this normally. I do experience some swallowing problems as well by the way, but more like the swallowing reflex that doesn't work. I read that increase of saliva is most of the time due to swallowing issues, not that you produce more. Strange thing is, that I have the feeling I can swallow my saliva without any problem, but I feel saliva pooling in my mouth very quickly. That makes me think I do produce more, but I'm not sure. I also think it is strange that I twitch everywhere, but do not have function loss in arms or legs, but I do have a problem with the saliva and no twitch there? Does that make sence?I have a neuro appointment half January and I will certainly ask him about this. I didn't have this the last time I was there yet. It started 2 weeks later.
 

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