Tongue

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Tongue

Postby Pole on June 16th, 2003, 6:42 am

Hi
I wonder what is your knowledge about tongue fasciculation as a symphtom of ALS. I know that are different opinions about that.
One says that tongue twiching is a bad sign (MND proppably) and other that it could be also benign.

And how do tongue fasciculations looks like? I asked my neuro about that and he told me that toungue fasciculations ook like worms would crawl inside.
When I am looking at my toungue it seems to move a little - I hardly can keep my toungue not moving (it looks like my tongue tremble a little). Is that fascics? I have NEVER feel toungue twiching.

What do you think?
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Hey there

Postby KERRI on June 16th, 2003, 6:55 am

Pole,
I went through this a few months ago, I thought I felt a twitch in my tongue and I of course freaked out, fortunately I work with a physician and we do emgs on tuesdays, he looked at my tongue to me it was twitching, although looking back it was quivering probably because I had stuck it out to examine it about 50 million times that day. He laughed and said he saw no fascics, he said "do you think it is twitching" of course I said yes, so he said "would you like me to stick a needle in it" of course I said yes. It was completely silent, no pop, no crackle no nothing, he said that is an excellent sign, there is nothing going on here. I was soooooooo happy.

Tongue twitches can go with MND and they can be benign just like any twitch, and sometimes when we twitch everywhere we actually think all the twitches are real, but some are psychosomatic, you see we are so used to twitching every time something in our bodies move we think it is a twitch.

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Postby Pole on June 16th, 2003, 7:07 am

Thanks Kerri.
Are you here all the time? :)

I hope you are right that tongue twiching also may be benign, but when I did my EMG, the neuro told me to show the tongue and looked at my tongue very precisely. So maybe the tongue fascics are really important????

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Postby KERRI on June 16th, 2003, 7:12 am

Pole wrote:Thanks Kerri.
Are you here all the time? :)

I hope you are right that tongue twiching also may be benign, but when I did my EMG, the neuro told me to show the tongue and looked at my tongue very precisely. So maybe the tongue fascics are really important????

Marcin


I did not say they are not important because they are but they can also be benign as well as malignant, did the neuro say your tongue was twitching?

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Postby Pole on June 16th, 2003, 7:23 am

No. He said that is normal trembling of tongue, and told me that tongue fasciculations look like crawling worms.

Have you (not only you, but also your friends of this forum) ever been on ALS patients forum? I found that group on http://www.braintalk.org. I read some post and scared again - for example one guy told that he had clean emg and he has diagnosed "ALS clinically suspected". He also has many other symptoms (associated with fasciculations) like ataxia, hyperreflexia in 4 limbs, loss of dextirity in hands and Hoffmans symptom (do you know what is it?).

It is terrible. I prefer BFS forum and promise myself not to read ALS forum again. You also don't do this.

Regards
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Postby KERRI on June 16th, 2003, 10:08 am

Pole wrote:No. He said that is normal trembling of tongue, and told me that tongue fasciculations look like crawling worms.

Have you (not only you, but also your friends of this forum) ever been on ALS patients forum? I found that group on http://www.braintalk.org. I read some post and scared again - for example one guy told that he had clean emg and he has diagnosed "ALS clinically suspected". He also has many other symptoms (associated with fasciculations) like ataxia, hyperreflexia in 4 limbs, loss of dextirity in hands and Hoffmans symptom (do you know what is it?).

It is terrible. I prefer BFS forum and promise myself not to read ALS forum again. You also don't do this.

Regards


So, he had a normal emg in the begining, but he was clearly showing signs of ALS, hoffman is a pathological sign of ALS. It is very rare to have a clean EMG or several emgs and than go on to having als, how long after the clean emg was he diagnosed, and he has not even gotton a definite diagnosis, I read about a man who started out like us with full body fasciculations and was diagnosed by emg and physical exam, diagnosed with als that is, than 9 years later still alive and mobile he finds out that he does not even have als, it was some type of a spinal nerve inpingement or something, so do not believe everything you hear, was his exam completely negative or were there things that showed up but still put him in the negative category. You cannot even speak to these people or their doctors, so you should not trust their posts, heck maybe you should not trust ours 100 % either, but the fact is trust your doctor and time will tell, after a while it will get better you are early in all of this, so my advice stay away from the ALS ROOM, remember those people have ALS so they are not very happy the last person they want to talk to is someone with a likely benign condition.

Kerri

I am sure the guy you read about was probably the same guy I read about, did he have full body fasciculations? By the time you have full body fasciculations there should be changes on EMG.


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Postby Pole on June 16th, 2003, 10:18 am

Kerri,
I'm going to stay away from ALS room as I said before. I cannot be sure, but I think that the guy from ALS forum is not the same you were read about.
He had fasciculations (but I don't know if as first sign) but also many other ALS symphtoms (like said before).

Could you tell me what exactly is hoffman? I know that is something whay neuro check in your hands, but I would like to know how the exam looks like and what is positive and negative reaction.

If you know that please answer me.
Thanks
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Postby dave YY on June 16th, 2003, 11:09 am

Pole,

Tongue fasciculations are absolutey no more ominious than twitches anywhere else. I've had them for more than four years. My two main neuro's I've seen, who have both twitched since med school, both said that's their opinion as well. Tongue twitching being an indicator of MND is definitely "old school" neurology.

Also, about the occasional scary story you hear--like the one at the ALS board at Braintalk (BTW all the twitchers hang out at the Neuromuscular forum on Braintalk), remember that the clincher is a clean EMG AND clinical exam... not just the EMG alone. As per the Mayo study, which seems to still be the gold standard. If you pass a clean EMG and clinical exam it would seem you're in the clear.

Many neuros don't even feel an EMG is necessary if the clinical exam is OK. Also, I don't think you can do Hoffman's on yourself. Even knowing what it is might influence how you react so it's better not to know I think!

Best of luck

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