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Active member
Oct 8, 2007
Learn about ALS
Beverly Hills
During my neuro exam yesterday, the neuro did notice what he called a tongue "tremor," which I myself had noticed before the visit. I have read in the past that tongue fasciculations are considered a likely symptom of ALS (as opposed to other kinds of fascics), but I'm not sure about the difference, if any, between tongue fasciulations (or twitches) and tongue tremors; is this a formal terminological distinction that describes two different phenomena, or an informal variance in vocabulary to describe the same thing? Frankly, I forgot to ask the neuro if my tongue "tremor" was the same as--or looked like--tongue fasciculation, so I'm wondering what people out here know about this issue.

I would say the same, but call your neuro, ask his nurse to ask him.

Also, get a copy of your file from them.


Thanks for your reply. I have read in a couple of places that tongue tremors or fasciculations--or whatever they're called--are more likely to be a symptom of ALS than fascics occurring elsewhere in the body. Have you come across this hypothesis? It seems I even read this in a doctor's post in a Cleveland Clinic forum

Yep, that's true. It's more idictative of ALS.
Just spoke to the neuro. He says that a tongue tremor is different from a tongue fasciculation, although he says it takes an "experienced eye" to discern the difference. He says that a tongue tremor is not to be considered an abnormality in the same sense that a tongue fasciculation is. His description of the actual difference between the two was not especially clear to me, though. As I look at my tongue, it seems to have a tremulous, vibratory kind of action in the middle, with an occasional more jerky motion--but I can't tell if the latter is inherent in the tongue or because of some subtle voluntary movement I'm making. Obviously it's not good to dwell on this too much--except for the fact that if I were having tongue fascics, that would be cause for concern. As in call such cases, the key is to see if any additional symptoms develop--so far no slurring or swallowing problems, etc., so perhaps there is no cause for concern.

I have a fine tremor with all of this and even my tongue does this, but it definitely is not fasciculations. There is definitely a distinct difference in the terminology tremor and fasciculation, they are not the same. Many people have tremors, even completely healthy people. I would not worry about a tremor of the tongue. Almost everyone has tremor or shakiness when holding their tongue out, just some of us are worse than others.

Dorlands medical dictionary says: Tremor - an involuntary trembling or quivering

Fasiculation - a small local involuntary muscular contraction visible under the skin representing spontaneous discharge of a number of fibers innervated by a single motor nerve filament.

A doctor would not misuse these words. A tremor happens to normal people, don't worry. Ever notice old people? Or Parkinson's? Lot's of people just tremor, it is not the same......
I didn't necessarily think the neuro was misusing the words--I just wasn't clear on the functional diffference between the two terms, although now it's clearer to me--especially when he said that the difference in the tongue is subtle, that it takes an experienced eye to see it. The other issue is that I don't have tremors elsewhere in my body, but I do have fasciculations here and there, so that got me to wondering . . . probably unnecessarily, though.

Jeff - we were posting at the same time and pretty much saying the same thing! I'm glad the neuro cleared it up for you so you don't have to add this to your worries. :)
Hi Its me havent been posting for awhile. Hope everyone is hanging in there. I think I can help since I started with bulbar symptoms. First of all If you can move your tongue quickly side to side you dont have a muscle weakness there, even if your tongue vibrates or quivers ,alot of people have that when they stick out their tongues However if you have horseness a feeling of a lump in your throat slurred speech difficulty with liquids and or solids shortness in your tongue scalloped edges on the tongue unable to move your tongue firml;y against you cheeks and try filling your cheeks up with air and poking the side of your cheeks and the air in your cheeks dont resist Then I can assure you its ALS becaause nothing else presents with all of that. Hope that clears bulbar onset Pat
It's nice to hear from you Pat, hope you are doing well.

I have to share this information that Annmarie found in her research and shared with me. It clearly shows that bulbar symptoms DO NOT HAVE TO BE ALS! So, please DON'T be scared, there are other things that can cause speech and swallowing problems. By the way, dysphagia is trouble swallowing and dysphasia is trouble speaking, medical terms used in this report. Read all these case studies, they all are bulbar symptoms and none of them are als. Good luck.
Thank you for the info I spoke to my doctor about that but because my emg shows nerve involvement not muscle He ruled it out But you are right the symptoms sound just like mine.
Now I am getting worse much faster What took 7 years to get to is going so fast I lost hand arm finger use. WHich is way worse than losing speech.And I thought it was bad losin speech Now Its way worse losing my hands and arms,but I still can walk I guess Ill think losing my legs will be worse then losing my hands ,so I guess it can always be worse .So I live for today and not worry about tomorrow Pat
Tongue twitch

Yesterday was the first time I ever heard of tongue fasculations. Don't think I spelled that right, lol. Anyway, went to doctor again, because muscle spasms were getting worse and more frequent, over 30-40 a day. Just about every time I move, I get a spasm. Well, while at the office and doing an exam, he asked me to open my mouth and stick out my tongue. He repeated this 3 times. He said he didn't want to scare, but what my tongue was doing was indicative of ALS. Now after reading these posts, I noticed the word scalloped, and thought that was strange because I said my tongue looked scalloped on the sides. Oh, and yes it does go crazy. Looks like a roller coaster ride going on in my tongue. Definitely not twitches, but whatever those other things are called.

I still haven't received and affirmative diagnosis, as they just did the blood tests yesterday, but I should know in a little over a week. However, deep down, I think I already know. Hard not too, when you can't explain why you have become so weak and get charley horses all the time, and now the tongue thing. Am I being negative. I am usually an upbeat person, but it's hard when the evidence all points to this.

Any comments or ideas?
I don't think you sound negative, you know when your own body is not behaving like it should, you know when there is somethimg wrong. We just have to try to keep our chins up despite being sick. Hang in there. Mya
Thank you

Thanks for all the kind replies and information. I am definitely going to find an ALS specialist. I am hoping and praying this is not ALS, but it is definitely something to do with my muscles. I have lost quite a bit of strength and use in both hands and legs. I know after the blood results come back, I will contact a specialist. My mom (who just had surgery the other day at Mayo Hospital), is going to get a recommendation for a specialist from them. Right now I am going to keep my chin up, but it is very hard, as I am sure most of you know.

I hate being tired and achy all the time. I think right now more than anything the fatigue is what bothers me. Just have no energy. I will keep you up to date on how things progress.
You really don't need to travel outisde of Arizona to get a definitive diagnosis of your condition. Either of the following two places would provide first-rate services:

(602) 406-6262
(602) 406-4608 FAX
E-mail: [email protected]
Dr. Shafeeq Ladha, MD, Director
St. Joseph's Hospital and Medical Center
Barrow Neurological Institute
500 West Thomas Road
Suite 710
Phoenix, AZ 85013

(520) 626-6609
(520) 626-6925 FAX
Email: [email protected]
Lawrence Z. Stern, M.D., Director
University of Arizona
Health Sciences Center
1501 North Campbell Ave.
Tucson, AZ 85724
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