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Tongue help.....

PostPosted: October 27th, 2013, 4:06 pm
by Sadface
When you stick your tongue out, is it normal for it to shake/ripple. Or are these twitches??
I just decided to study my tongue and it goes crazy

Re: Tongue help.....

PostPosted: October 27th, 2013, 5:52 pm
by Englishtwitcher

I was there a month ago with my iphone torch app sticking my tongue out at any opportunity when I did not think anyone was watching. In the car, the supermarket, home you name it.

Yes mine quivers when I stick my tongue out. So does my husband's tongue and he's not twitching. I also have scallops round the edge (faint) and it's got one side higher than the other. My neuro and gazillion doctors I've shown it to ( and my dentist who knows I have health anxiety) have all said my tongue is NORMAL. The only thing that is not normal is staring at it all the time. Also you never used to look at it until now so its probably always looks the same and quivered. X

Re: Tongue help.....

PostPosted: October 27th, 2013, 9:56 pm
by Josmo
Take a look at my post about tongue i think i have few ( one even contains a video ) and RELAX....

Re: Tongue help.....

PostPosted: October 28th, 2013, 12:29 am
by Yuliasir
hahaha :)))

completely and absolutely normal, my dear, do not worry about it.
tongue is DESIGNED to move easily, and if you stretch it out, it shievers and quivers, and IF NOT - that is not normal :)

Re: Tongue help.....

PostPosted: October 28th, 2013, 12:50 am
by Sadface
Thanks :-0

I seriously had my iPhone torch on it to. It just ripples away and I was really trying hard to keep it still.
I was tempted to try uploads video to show you but didn't know how :-/

So normal then.

(I'm sure I'm losing my mind. I just sit here and feel every little twitch all overmuch body, just little pops.)

Re: Tongue help.....

PostPosted: October 28th, 2013, 2:40 am
by Englishtwitcher
And don't forget anxiety makes everything quiver.

Re: Tongue help.....

PostPosted: October 28th, 2013, 3:56 am
by Sadface
Yeah I guess so. It's just when you check it and you think "I'm not even anxious" when really your body is crawling in anxiety!
I think I feel all my insides slightly shake about. I have a slight left hand tremor probably anxiety related.
I find it so draining.
It's hard to picture me ever bring anxiety free about my health.

I try to stay away from internet but then I have a symptom and I'm then drawn to looking it up and "finding an answer."

I will try not to stare at my tongue again :-/

Re: Tongue help.....

PostPosted: October 28th, 2013, 5:24 am
by Englishtwitcher
Seriously you have health anxiety. What I'm reading is me a few months back. Shall I tell you why I've been in a hole this year (apart from the things that have happened?) dr google. It got so bad that I was even starting to involve my kids in it - I took my youngest to a neuroligist because I was convinced he had ataxia telangectadia (don't google it) all because he was small for his age and kept falling over a lot. I even convinced myself that he had the red broken veins on his ears that are a symptom. Of course he didn't and I noted that the eminent child neurologist i took him to said in her letter "mother highly strung with OCD tendencies" :oops:

Then I thought my other son had Huntingtons because I had taken him to moorfields A&E for a genuine reason and they noted loss of pigment at the back of the eye. Implications: nothing or something serious but most likely born with it. What did i do while waiting for him to see the retinal specialist (which they prompted) i googled and because most people never know they have loss of pigment the only things that come up are horrendous degenerative diseases. I almost went into catatonic meltdown while waiting ( a whole month) to be told he was born with it and when I mentioned Huntingtons the doc looked at me with raisec eyebrows and said oh dear dr google is not a friend to anyone.

Please stop googling. We are not doctors. My dad has a 20 year old health encyclopaedia he uses if he needs to find something out - and he only listens to his doctor. Things are much simpler the less info you have especially to the untrained lay person. If you want to chat send me a message I've been dealing with this for a year and I'm getting better slowly. I have relapses but you have to recognise it for what it is - health anxiety.


Re: Tongue help.....

PostPosted: October 28th, 2013, 4:33 pm
by Anxious guy
That's normal ... Just like holding your leg up its going to move a little as your using muscles !
My tongues actually twitching on the tip for over a month and its stressful !! At rest or triggered by talking mostly its a little line at the tip twitching... Even my neuro said that's normal as he said I have BFS ... I still worry though :-s but that's health anxiety for you !!

Re: Tongue help.....

PostPosted: August 16th, 2014, 12:56 pm
by Sadface
I wish I had put on this thread initially, what my tongue looked like. As now I have a chunk out the side and I don't know if always been there. If I'd have put it was the same last year, I'd be more confident now that's it's just the way my tongue is!!

Re: Tongue help.....

PostPosted: August 19th, 2014, 4:09 pm
by pdodge715
Hey Sadface - You're doing exactly what I did throughout most of my first 12-18months of symptoms... literally "checking your tongue in the mirror" like the old cliche for hypochondria. Don't worry.

Most likely, you are concerned with your tongue because you fear bulbar-onset ALS. As I'm sure you've heard/read before, this is the most rare manifestation of the disease, and it also triggers a VERY rapid progression of symptoms. So you posted 10 months ago about twitching/rippling in your tongue (which is completely normal btw...the human tongue ripples when extended, which is why a neuro checking for bulbar will ask you to relax your tongue prior to visual exam. AND BFS can manifest in the tongue - I have had daily fascics in my tongue since late summer 2012), and now you're concerned that maybe something else is wrong with it. Maybe something is wrong with your tongue if there is a phantom chunk missing all of the sudden... but it's not bulbar, promise you that. 10 months into bulbar-onset ALS you would be unable to speak, chew, swallow, etc. Take a breath, put your tongue away. You're ok.

Re: Tongue help.....

PostPosted: August 19th, 2014, 4:26 pm
by Sadface
That's a really nice post thank you.
I initially thought I had limb onset and this has changed recently to what you describe. But either way, it was nearly 12 months ago the MND fear started.
I've been feeling slightly more stable today: checked my tongue about 20 times which is actually a huge cut back!!
I'm having frog in my throat symptoms, soar throat and having to clear it. But I don't the k soar throats are a symptom so trying to be rational there :-/

Thank you for your comment. I often re read comments when in a state of panic :-)

Re: Tongue help.....

PostPosted: August 19th, 2014, 4:44 pm
by pdodge715
I'm glad to hear you're doing better today! As for your throat symptoms: When my tongue first started twitching, I was OBSESSED for days. I was actually out of town for work and kept sneaking out of conferences to check my tongue in the mirror. I was only a few months into twitching in general at that point, so Google had thoroughly convinced me I was going to die in 5 minutes and this tongue twitching thing was just confirmation for me. Anyway, my tongue had been twitching for about 3 or 4 days, and I was at home doing dishes... gradually, I started to feel my throat close up. Swallowing felt strange, then difficult, then almost impossible. I was in a full-blown panic - "So THIS is Bulbar! Tongue twitching first, now my throat's closing!" - I was so panicked I seriously couldn't function, so I just laid down on the floor. I laid there for quite a while, steadied my breathing, focused on lowering my heart rate, and slowly my throat started to open back up. Swallowing was getting less difficult, the feeling of having a brick sideways in my esophagus was dissipating, and the invisible hands clenched around my neck were loosening... It wasn't bulbar, it was a full-blown panic attack. And no wonder! I had spent the past 3 or 4 MONTHS in a constant state of panic, and the most recent few days in an even more heightened state. So, long story short, it sounds like you're giving yourself anxiety.

If you're not already familiar, go here: They have a list of anxiety symptoms right on the front page, along with a lot of great resources. An even longer list of what anxiety can do - that reads an awful lot like someone describing the symptoms of BFS - can be found here: Are you on any anti-anxiety drugs/treatments? I personally don't know that I could function without Xanax. Perhaps you could divert some of the attention you're paying your throat and tongue to exploring anxiety as a possible cause/agitant of your symptoms, and seeking treatment there. Generalized Anxiety Disorder is a much nicer diagnosis than the one you're chasing ;)

Re: Tongue help.....

PostPosted: August 20th, 2014, 1:32 am
by Sadface
Oh I've had full blown panic attacks before: I think 4 really horrid ones.
I take 20mg of meds to try to help both anxiety and the depression I get without them!
It's more health anxiety I have!
I think being on them helps a little to think things through. This time 2 weeks ago the only answer would be MND. Now I think "maybe it's....(because I clench jaw, have a dry mouth etc.)
I do fluctuate. I hate it when I feel ok but then my ribs or done whee random, starts twitching!
I think "jeez give me a break from this worry"

I've had CBT and this helped. But once it stopped I dipped. I think I actually liked having someone to talk to openly.

How are you doing now then?

Re: Tongue help.....

PostPosted: August 20th, 2014, 8:47 am
by pdodge715
I'm doing ok, overall. All the media attention the ice bucket challenge is getting has me worked up quite a bit, but on a normal day when I can think logically, I'm fine! I'm trying to replace my Xanax dependency with meditation and other methods of self-relaxation - the Xanax works wonders, but it does leave me feeling quite exhausted, which is not ideal for chasing around my 1 1/2 year old daughter! I know you'll get past this, but for your sake I hope it's sooner than later!