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Tongue

PostPosted: August 31st, 2014, 7:41 am
by joycecaroll
I have had tongue fasciculations (twitches, myokymia?) for the past 3 months. I can feel them. They last just a few seconds and then go away. I have them maybe once a week.

I had a clean emg of my tongue 3 weeks ago. I'm 24 years old.

Am I in the clear?

1. I've read EMG's are only 60% sensitive for MND's. Is this true?
2. I've read tongue fasciculations are never benign. Is this true?
3. Are ALS related fasciculations constant from the start, or could the come and go like this?

Re: Tongue

PostPosted: August 31st, 2014, 9:22 am
by misterjuanperalta
Good questions for a Neurologist. Accuracy depends on experience, technique and number of areas tested. Absolutes like "Never" are unlikely and rare to be true. As far as I know, once in effect with ALS, they are continuous until muscle death. That said re-innervation or benign twitching can be constant. Hope this helps.

Re: Tongue

PostPosted: August 31st, 2014, 12:08 pm
by Yuliasir
1. Have no idea really about exact figures, but as far as I can see form stories told on this board, they find pathological changes even when they are not manifested clinically yet.
2. Tongue TWITCHES are usually benign but plain people often confuse them for fasculations. Only a neuro can distinguish them, so self-diagnosis is clueless.
3. As far as I know, ALS fascics are continous until complete death of the muscle and are rather faint and need stroboscope to see them. What we usually have are twitches, and this is different process.

Re: Tongue

PostPosted: August 31st, 2014, 3:23 pm
by misterjuanperalta
TONGUE- If you’ve developed the habit of persistently examining your tongue in a mirror, you are wasting valuable time if your only symptom is twitching. You may be perceiving difficulties chewing and swallowing food, but there is a huge difference between perception and performance. If the food is getting chewed in a reasonable amount of time, and swallowed without gagging and choking, then you do not have bulbar onset ALS.

Re: Tongue

PostPosted: September 1st, 2014, 1:57 pm
by joycecaroll
Yuliasir wrote:1. Have no idea really about exact figures, but as far as I can see form stories told on this board, they find pathological changes even when they are not manifested clinically yet.
2. Tongue TWITCHES are usually benign but plain people often confuse them for fasculations. Only a neuro can distinguish them, so self-diagnosis is clueless.
3. As far as I know, ALS fascics are continous until complete death of the muscle and are rather faint and need stroboscope to see them. What we usually have are twitches, and this is different process.



What's the difference between twitches and fasciculations? Usually the tip of my tongue twitches for a few times and then it goes away.

Re: Tongue

PostPosted: September 1st, 2014, 2:54 pm
by misterjuanperalta
They are sometimes used interchangeably. Fasciculations is the medical term and Twitches is the street term. I encourage correction.

Re: Tongue

PostPosted: September 2nd, 2014, 11:03 am
by joycecaroll
Still I wonder about what the fasciculations in ALS are like. Are they persistent or could the they come and go with weeks in between?

Re: Tongue

PostPosted: September 2nd, 2014, 1:58 pm
by Yuliasir
as for the difference between twitching and fasciculations, as far as I know, there is a difference on the EMG level - special features, like specific rate/amplitude or waveform. Benign twitching seems to be less organized or have another specific features, allowing to make a differential diagnosis.
At least when I had my emg, the doctor was very curious about certain rhytmic activity found in my thumb muscle (despite on having irregular twitching contractions) - he really tortured me with the needle to get more samples of this waves and analysed them using statiscitcs to determine if they are indicative of motor neuron damage or not (finally he decided that this was not a pathological sign).

Re: Tongue

PostPosted: September 6th, 2014, 3:11 am
by TwitchyDoc
EMG being sensitive in MND in 60% - as I PMed you, this is a common mistunderstanding.

This statements relates to EMG sensitivity in the context of El Escorial / Al Awaji criteria where it has been shown that it contributes to reaching a final diagnosis in about 60%.

So it is not about EMG missing things, it is about EMG findings that need to be weighted in the context of the clinical picture.

Re: Tongue

PostPosted: December 20th, 2014, 8:42 am
by joycecaroll
I'm in panic mode today. I have this crawly feeling on my tongue. It's been there for several months, but I never thought much about it. It kind of feels like I have strains of hair on my tongue.

Today this thought hit me: what if I'm feeling fibrillations? Or if it is the "judder" talked about in hyperexcitability?

I know I'm obsessing and so on. Please, I'm asking you to not answer if thats all you want to tell me. I need support right now.

Re: Tongue

PostPosted: December 21st, 2014, 10:04 am
by misterjuanperalta
Elaborate on "judder" and "creepy crawly" please.

Re: Tongue

PostPosted: December 22nd, 2014, 12:10 pm
by Xina535
Hi - I would like to ask a question to try to help joycecarrol.

Wouldnt it be....if twitching in the tongue were due to ALS, by the time the twitching starts, wouldn't there already be significant slurring, choking and/or other obvious, persistent problems?

Re: Tongue

PostPosted: December 28th, 2014, 12:45 pm
by joycecaroll
Well I think that's true in most cases, however it's the hyperexcitability phase that worries me. Does anyone know how frequent fasciculations would be in that phase?

Re: Tongue

PostPosted: December 28th, 2014, 1:10 pm
by Xina535
What is the hyperexcitability phase and when does it occur? Does it always occur?

Re: Tongue

PostPosted: December 28th, 2014, 2:28 pm
by joycecaroll
Xina535 wrote:What is the hyperexcitability phase and when does it occur? Does it always occur?



It does not always occur. It's a phase where nothing but fasciculations show on EMG. It's rare forit to last longer than a few weeks. It's been studied only in pals, never as a first symptom. So please don't worry just because I do. I have OCD and always focus on the rarest cases.