View Full Version »› tongue fasciculation redux
I know this issue has been discussed before, but I would like someone to refresh my mind. Thank you for indulging me.
For those PALS or CAD (currently awaiting diagnosis) group with tongue fascics, could you please describe what tongue fasciculations feel like to the person? Are they felt, seen, or both? Does the tongue ondulate or does it twitch? Are there other symptoms like biting your tongue, etc? Thank you.
Jamiet
06-20-2007, 02:18 PM
At first i couldln't feel them. I could see them, in the bulk of the tonuge. It makes little dips, like apin pusing on the middle. then, i felt like it was vibrating at night, but this starteda month or so ago, or 5 months after the twitches.
Yes, i bite my tongue all the time, i bite my lip all the time. It's like my jaw just jumps sometime when i bite my tongue, almost like a reflex.
It also hurts alot....
rgds,
jamie
I know this issue has been discussed before, but I would like someone to refresh my mind. Thank you for indulging me.
For those PALS or CAD (currently awaiting diagnosis) group with tongue fascics, could you please describe what tongue fasciculations feel like to the person? Are they felt, seen, or both? Does the tongue ondulate or does it twitch? Are there other symptoms like biting your tongue, etc? Thank you.
Wes_E
06-20-2007, 02:27 PM
I can't feel it but can definitely see it twitching around. I haven't bit my tongue...YET.
The funny and sad thing is, my first neuro never noticed it. It was my ENT that first noticed it and sent me to an ALS specialist.
It is also beginning to atrophy. I slur really bad and will probably lose my ability to speak w/i the year.
This disease sucks but at least not enough is being done! A little tongue in cheek humor. Plese pardon the pun
jimercat
06-20-2007, 07:36 PM
I talked to my husband about this.
His response was: "I call them fascinations, because when I or anyone else looks at my tongue, we are fascinated!"
He does not feel them and he doesn't bite his tongue. And sorry to say, when he showed me his tongue to demonstrate, the atrophy has progressed.
Believe me, if your tongue is twitching you are gonna soon sound drunk!
His tongue just twitches- no undulation.
CJ
jimercat
06-20-2007, 07:58 PM
annmarie-
The tongue is a very big muscle. Most people do not realize this, at least we did not until ALS came a knockin'.
The quivering does not stop, it is constant, as the neurons are mixed up and can't communicate properly with the muscle. This will go on til there is no muscle left to try to communicate with.
My husband did not know his tongue was involved at all - we didn't realize the "depth" of the disease. The first nuero we saw asked him to stick his tongue out, that is when I started crying.
3 months - I dunno. My husband had a serious choking episode 12/05 and couldn't even swallow his own saliva. He was diagnosed (1st opinion) 09/06 and it seemed like about 6 months from 12/05 til I thought he was maybe imbibing on the way home from work. LOL But you have to remember everyone is different. My husband still walks fine. But I think he is soon going to loose his speech, Hands are going...
annmarie - I must thank you for being so sensitive to others here.
CJ
When my Neuro checks for tongue fasic's he has me hold it in at rest in my mouth. If you stick it out you are straining the muscle and of course it will quiver. When I stick it out he has me move it as quickly as I can side to side and then push on his finger from inside to check for strength. Is this what your doc's are doing?
AL.
jimercat
06-21-2007, 11:05 AM
Yes AL, that's what husband's neuro does. When the first neuro checked his tongue I didn't mean like sticking it all the way out, rather like opening mouth, tongue to edge of lips and then back at rest. Then he did the strength test with tongue going from side to side inside cheeks.
Now husband's tongue is looking kinda pointy and gelatinous , I assume this is atrophy.
We go back to Emory 07/13. Will see where he's at on the scale then.
CJ
From what I gather, then, the sensations of tongue fasciculations are somewhat different from fasciculations in other muscles. When I feel the fasciculation in a muscle, it is a clear sensation of a twitch or a few twitches one right after the other. Some of you describe a "quiver" effect. By quiver do you mean ondulations that can be seen in the tongue or do you mean the tongue jumps around in the mouth? Also, what would be the difference between a tongue tremor and a fasciculation, then? I wonder why some of us bite our tongue? Also how common is tongue pain in those of us who have tongue complaints?
CJ, when you say his tongue twitches, does the whole tongue jump around in the mouth, is that the impression you have when you see the tongue, or does the tongue remain stationary, but you can see movement in the body of the tongue?
Thank you.
jimercat
06-21-2007, 12:30 PM
Vmd-
No the tongue doesn't jump around in his mouth. It remains stationary and the fasciculations are spontaneous as the motor neurons are firing.
It's kinda like there is an elastic thread inside his tongue that pulls and releases the surface of the tongue at different intervals.
I came across a video on the web of the tongue with fasciculations, but can't find it right now.
My husband doesn't have any pain in his tongue.
CJ
CJ:
Let us know if you find the video. Thank you.
Jamiet
06-21-2007, 01:52 PM
Iv'e seen about 40 different stories on tonge fasics. It can range from jumping around to barely twithcing as Jimercat describes.
The quivering is when you stick it out, the edges "quiver", this is from the reduced muscle not being able to control the tonge. it's not twithcing that casuses quivering
It will quiver on the edges and look like "wiggling" in a "wave motion form the outside tothe middle, and really fast. You will be able ot tell if it's quivering, it's very distinguishable.
rgds
jamie
All the videos I found are really short, but here they are.
http://www.neuroexam.com/content.php?p=27
http://youtube.com/watch?v=e98mLhCzAbc
Jamiet
06-21-2007, 03:42 PM
Lelise,
is this lady normal in her exam? it looks as if she has normal reflexes? is her tongue normal?
Leslie:
Thanks for posting the videos.
Jamie:
If tongue fasciculations have so many different appearances, perhaps it is best to let the neuro determine whether I have them or not, eh?
It seems, however, that if there are tongue fasciculations present, one should also have other bulbar-type symptoms.
annmarie:
Yes, I have read something similar about the tongue fascics and the other bulbar-type symptoms occurring in some form of temporal conjunction.
Another question: I believe, it was you, but did you also mention that fascics in other parts of the body with ALS are more likely to occur after use of the muscle, as in the case of exercise? Or is it the case that fascics are spontaneous and are not trigered by exercise activity?
jimercat
06-22-2007, 05:03 PM
D@#% it I just can't find that video. It was perfect for showing someone with bulbar onset. Oh well...
And yes Annmarie, Leslie is right - the drooling ect... will be there at some point.
All of the fasciculations are spontaneous and the tongue is a long muscle, so swallowing and chewing and speech will be affected since the whole muscle is being destroyed.
It's a year and half since my husband had that swallowing episode and now there is usually saliva at one corner of his mouth. The more exhausted he becomes the more saliva there is and the more slurred his speech becomes. His facial expression has changed too. Kinda droopy looking. Now when he talks it seems he takes such an effort to get the words out! And sometimes sounds like he's mad when he's not.
This really sucks
gotta go now
CJ
sherry0459
06-23-2007, 10:09 PM
Hey CJ, I have the tongue issues also. I sound drunk, have too much saliva. And mad when I am not. The waves on the tongue is a good example for me. Often I wake up at night with it really shaking in my mouth. The more exhausted I am the worse it is. But I mainly wanted to say remember when your Mother told you not to stick out your tongue and now it seems for all us to be the norm, Ironic huh. I cannot say again how much I appreciate you all and this site. sherry
I have a related question. I have noticed definite tongue atrophy and the fascics as well. Like a coule of you, I also have pain in the tongue and the throat at times. I am wondering how soon after experiencing these changes in the tongue you guys started to have swallowing problems and speech problems? I have been told I slurr my speech and sometimes find myself having a difficult time projecting my speech. Then again, I have been told I slurr my speech for a few years. So this is not a recent symptom. I know that there are individual variations, but what is the average time between tongue atrophy, tongue fascics, and swallowing and slurr speech problems? I have read in other sites, and as I described above, they seem to come together.
I found this video which shows how difficult it is to identify tongue fascics:
http://www.utoronto.ca/neuronotes/NeuroExam/cranial_12.htm
Another question, is related to bulbar onset versus limb onset ALS as a diagnosis. I seem to have started with limb weakness, but I am now having problems with my tongue (atrophy, fascics). However, the tongue atrophy and fascics may have preceded the limb weakness, but since I had never checked my tongue until recently, I would not know which came first (limb or bulbar issue). In such unclear cases, would the diagnosis be bulbar or limb weakness onset?
jimercat
06-25-2007, 11:42 PM
vmd-
everyone is different. husband fell off ladder broke both feet/6mos later running after son broke leg. no bone weakness found. then he couldn't swallow - hospitalized. who's to say if he was just clumsy and stupid or if this was a precursor to the disease?
the swallowing thing was very scary. now he has slurred speech and difficulty chewing and swallowing.
no one can know how this starts. how long it will take. some people live a very long life after dx, some don't. it depends on how they want to live their lives.
there is no measuring tape...to determine when so and so and such and such will happen.
CJ
Yes, I guess those of us looking for answers cannot find that elusive "measuring tape." There is so much variation, that a diagnosis can come quick or be delayed for years. Meanwhile, the anxiety levels increase.
Recently, I have been having a very difficult time with my symptoms. All of this has made me very depressed.
Sometimes we just need to take a break from it all. My symptoms, too have been exacerbated these last 4 weeks, really changing my quality of life. I became a lot more depressed when I read about Lorie's brother Timothy, who complained to the docs about twitching and weakness only to find seven years later he had als. Sometimes too much info can really get us down and a break to remember the good things in life is needed. Try to wait for your next appointment without learning anymore and live your life with the body you have for now. That really helps me and I pray it works for you as well. Good luck~Leslie
CindyM
06-26-2007, 06:48 PM
your life with the body you have for now.
Well said, Leslie! My sentiments exactly! Cindy
Hang in there Leslie. I'll be praying for you.
Do any of you bite your tongue when you speak? I have noticed this in addition to biting my tongue.
Jamiet
07-06-2007, 02:45 PM
i bite my tongue, lip and all kinda places in my mouth. It's like my jaw....jerks almost. LIke its hyperactive jaw reflexes.
Also, my tongue gets very "raw" sometimes, i don't know if it's due to me messing with it so much because it hurts or if it's something to do with whats up with me.
Who ever thought the tongue woudl give us problems....people think your crazy if you tell them your tongue hurts, etc.
rgds,
jamie
Jamie:
Yes, for now it's a minor nuisance, but one that is very bothersome when I eat.
CindyM
07-07-2007, 04:08 PM
My tongue and face are sore a lot. Face feels like it does after laughing a lot at a funny movie, or while standing and smiling for hours in a receiving line or something. I was not paying any attention to this, or the fact that my mouth gets tired if I eat something like a sub sandwich. In fact I simply gave up those foods.
But now you guys, LOL, have me sticking out my tongue in the mirror!:-D And I wish you all could see what I see. It is so silly it is downright funny. The left side of my tongue looks like it has a huge dent in it. And the right side rolls over the left so that it looks, well, silly. I'm going back to staying away from the mirror.:-D
AND I discovered that my toes apparently are double-jointed. I don't know why I never noticed this in my sixty years of clipping and painting toenails, but I can now bend each toe up, towards my face, at the joint nearest the toenail.
So that's it for me! I'm going to take a book out to the shade tree in the yard. My body has a mind of it's own, it seems, and I'm not arguing with it any more!:-D Enjoy your weekend, all. Cindy
I hope you have a good weekend, as well, and let's forget about our tongues, at least for this weekend!
While doing some research I came across a picture of true tongue atrophy. It turns out this gentleman has Kennedy's disease, but I thought his exam might be interesting to some of you. Leslie
http://www.aapmr.org/education/emgcases/emg7705c.htm
Thanks for the photo. I would say my tongue looks somewhat like this one, although not as pronounced a scalloped look.
