Overcoming Fear with Tongue Exams

[StephG22]

I had the same fears as you but now I am fine. First of all, when the neuro examins your tongue (3 have looked at mine) they tell you not to stick it out but to let it rest naturally. This is because when you stick it out it will tremble and twitch even on normal tongues. Even my 4 year old's tongue trembled when he stuck it out. Your tongue always moves and you can also see your pulse which can look like fine twitches. I had little twitches in the center of my tongue that scared me. My neuro said that in als your whole tonge looks like worms are crawling under the skin. Twitches here or there are nothing to worry about. Also, when you are fixated on this stuff you begin to imagine difficulty swallowing etc etc. When I stopped looking at my tongue or focusing on swallowing my symptoms vanished. Anxiety can definitely cause the symptoms you describe. When I was freaking out I could only swallow liquids. If you had als (which you don't since you had a normal emg) you wouldn't be questioning subtle symptoms-you and everyone around you would see something was wrong. Most of us have felt weak, but real weakness like in als causes you to actually lose function of a limb. My brother had real weakness in one leg and arm (couldn't use either one), slurred speech and abnormal reflexes and still he did NOT have als. My advice to you is 1. Do not look at your tongue in the mirror 2. Do not go on als web sites. No matter what disease you look up you will always find symptoms you can relate to. 3. Do not examine your muscles, twitches or anything else looking for things you don't want to find.
Keep reading posts on this website. It really helps me to know I'm not alone! Thia site is like therapy for me.

 

[Caleb67]

StephG22,

I am SO glad to hear you say that the Neurologists are only interested in examining a "rested" tongue while it's INSIDE the mouth! I could actually feel my anxiety level drop after I read your words!

I simply cannot keep mine still if I poke it out, although everyone else that I know can do it without a single twitch! When my regular family doctor examined me yesterday, he stuck out his tongue as he examined mine and noted my writhing tongue (his was perfectly still). He said "I don't wont to scare you, but a twitching tongue IS a sign of ALS. I'm not saying that you've got it, but that's a symptom." He then said that anxiety may be making my tongue worse. I don't think most medical doctors regularly examine the tongue for twitching.

My reduced gag reflex thing still has me a bit worried, but I'm hoping that anxiety may play a part in that to. I can still swallow okay, but like you said--when you FOCUS on something like swallowing or slurring your words you tend to discover more problems. And yes, reading on ALS sites is probably the worst thing we can do.

Thanks again!

Wesley

 

[furballfury]

Find another doctor Wesley...this one's bedside manner is ridiculous.

Tongue twitching is common, and the tongue is just another muscle in the body that may twitch like any other. According to numerous medical journals and websites, almost EVERYONE experiences benign fasciculations in their lifetime that can affect ANY voluntary muscle group in the body - this includes the tongue, and is no more indicative of bulbar ALS than an inability to swallow, which ALSO can be caused by hundreds of other benign or less severe syndromes than ALS. In my opinion, it's flat out negligent for your doctor to have presented the facts to you that way, without a lot more corroboration that there's a real problem going on with you.

My tongue twitches and trembles...so does just about everyone else's. Some of us think about it and start to freak (like you for SURE), others don't. That yours is shaking and shimmering more than your doctor's or 12-14 other folk's tongues is pretty much a good measuring stick that you're more stressed about this than those other folks, and not that you have any sinister problem.

PS: did your people froendly doctor also tell you that tongue shaking is a COMMON feature of benign essential tremor syndrome, which is just as harmless (though equally annoying) as BFS? I'm guessing no - just another reason why you should be both relaxed about this, and really mad at this guy for how he presents things that "don't mean to scare you..."

JG

 

[StephG22]

Your Dr probably never saw a person's tongue w/als so he is just reciting something he read and doesn't have his facts straight. I obsessed quite a bit about the tongue thing and it is a fact that anxiety makes it tremble more. Ever since I stopped looking at my tongue I never noticed another twitch but if I did look and saw a tremble fear would engulf me like a tidal wave and symptoms would mysteriously re-appear. I have a friend who's tongue twitches from time to time and he doesn't have anything sinister, not even bfs. Also remember that the tongue is a muscle and twitches like the rest of them!