Tongue twitches - can be felt

[Sadface]

"Need not".... Not best English, sorry.
I just thought twitch was like a bump or lump: without proper investigation unsure what it is.
If the likes of my family get twitches in a spot in thigh, butt etc.... Is that a normal "twitch" or a "referral to neuro" twitch.

[TwitchyDoc]

Twitches moving limbs are hardly fasciculations. I could imagine that a strong fasciculations in your biceps might slightly move the resting arm..but that is it. You can quite easily spot whether the twitch is fasciculations: simple twitch of a muscle bundle causing visible flickering on the skin but producing no movement of the limb.

[J4son]

Matt, I too think that those who cannot feel their fasciculations might constitute quite a significant number but I would be really interested what Mayo considers "quite common". Pamela Shaw is a professor of neurology, she authored several textbooks for neurologists and I do trust her. The same goes for Martin Turner (specializes in MND). Neither encountered patients with BFS and generalized fasciculations.).

When I read something like that I start wondering that maybe there is some confusion about what fasciculation truly means and maybe what we call twitching is not what top-neuro call twitching. Most people here if not all complain of widespread twitching (onset usually after visiting Google). Most of them went to their GPs or Neuros to be diagnosed with benign twitching. So that would mean their GPs and ordinary neuro who diagnosed us with benign twitching where able to see widespread benign twitching while top neuro like Pamela Shaw and Martin Turner have not, which seems a little bit weird.

Everyone coming to this site has widespread twitching. 99% of BFSers here have widespread twitching. So how come their GP where able to see that while experts like Dr. Shaw and Turner have never ever seen it, in decades of a career focused on MND? Maybe because what we call twitching is different from what they call twitching.

In my own case, my main complain today is random single twitching here and there. And when I say random it is everywhere. It’s single pop, once in the knee, once the elbow, once the back etc. Maybe once each several minutes. But it did not start like that, because if it had started like that, I would have never seen a doc. My twitches started in the deltoid muscle after a workout session, and it was a very fast twitching like one per second, strong enough to move my shirt. It lasted 24 hours, and then it went and never came back. A month later I had the same thing in my left thigh; it lasted 12 hours, same as the former, very fast, could be seen under my clothes and never came back again. Then after Google etc. it turned into one twitch here and there, widespread. In the beginin i thought only the fast visible, continious twitching where fasciculations like my deltoid and thigh twitch while the single twitch where not. But then reading this site it seems all these are twitching.

So maybe if I go to a doc, I would tell him that I twitch everywhere, but probably he wouldn’t be able to see anything during the visit. So it’s hard for me to believe that all our GPs have seen widespread twitching since they told us it’s BFS while top neuro did not. Which makes me think that maybe what they call twitching is something very similar to what is found in MND (means continuous, visible, obvious, non-stop, regular all the time, like what i described for my deltoid and thigh but without stoping after 24hours) but without and MND cause. Sometimes I really wonder how many people on this site have true BFS….

[bobajojo]

Jason,

I agree with you somewhat. I often read posts on here and just shake my head because the twitching is clearly within what is considered "normal" and the person is just very anxious. IMO, BFS means twitches by the minute. Not by the hour or day. I can tell you though that I went to the Mayo Clinic, showed them twitching in all 4 limbs, so they have seen what Pamela Shaw has not. They then gave me an EMG and it found fascics in upper and lower extremities (8 of 9 muscles). They then told me it was "quite common".

Here is what true widespread fasciculations look like... and this is BFS.

https://www.youtube.com/watch?v=jf4SfQv9YT8
https://www.youtube.com/watch?v=B-xsytF3I-8
https://www.youtube.com/watch?v=4IpDZs9 ... QqvqJUE9Hw
https://www.youtube.com/watch?v=Q60g1l9 ... QqvqJUE9Hw
https://www.youtube.com/watch?v=UwdqmNr ... QqvqJUE9Hw

The reason I say I agree with you "somewhat" is because I know of many many other BFSers who twitch like this and that's what we mean when we say widespread twitching. I think there were more who posted regularly back when I first joined but they are still out there I'm sure.

-Matt
P.S> My mom is 67 years old and she twitches like me (mostly in her legs but she says she gets them in her upper body too. Just not like I do.) But this is proof that whatever I have going on seems to be genetic and is clearly not hurting us... just like the doctors told me from the beginning.

[TwitchyDoc]

Matt, yes, I think that is possible. Anyway I talked to prof. Carvalho today and he said that it is "wrong" - that he had patients with generalized FPs and is about to publish it. Hopefully this is going to be soon, but you know how long it takes for a peer-reviews to happen etc...

I suspect some people here have just twitches (like tics) and not true fasciculations. I am sure mine, and Matt's (based on the video) are true ones. Matts were confirmed by Mayo's EMG.
On the other hand, it is true that majority of BFS videos on YT capture leg fasciculations, which is something quite known. But myself, I rarely twitch there. I twich over the chestwall, back, shoulders, arms...Not that often but often enough to be bothersome and causing anxiety from time to time.

[J4son]

Matt, thx for your reply and videos. BTW I consider the post where you describe your visit to the Mayo Clinic as one of the best posts published on this forum. In my dark days when I really thought I was soon gonna shake hands with the grim reaper, I used to read your post again and again many times a day

Docen, I really think top neurologists should define more accurately at which point muscle twitching becomes a syndrome. We have more than 5000 members here. All of those people complain about widespread twitching and were diagnosed with a benign condition by ordinary GPs and Neuro. So you have at least 5000 GPs and common neuro around the world (without counting the thousands of patients whom do not post on internet) who have seen at least a case of widespread benign twitching, yet you have two top MND expert like shawn and Turner saying they have never seen that in their whole careers. How come? Some top Neuro say BFS is rare, the Mayo Clinic told Matt it’s common. Some says BFS is usually focal yet 99.99% of people here have widespread twitching. Again, how come? Probably because all these people are not talking about the same thing. Time to harmonize all this knowledge i guess.

[Sadface]

I still don't think I get it enough to know if mine are normal or not.
I get them daily and if in not distracted I notice them a hell if a lot per min.
I have focus points and today it's my shoulders. I could feel them under my skin with my hand, but wasn't moving the skin on top.
To me that's strange.
I see them in feet but so use to that!
My knee doing it as I type: pop pop pop!!
I also get jerks of limbs mainly legs.
I'm a twitching jerking shaking person!
I just hope my GP is right by no referral

[Little Lost]

Can I add something.

The department I attend is a large teaching hospital that diagnoses approx 60 cases of ALS a year. It is a specialist spinal unit taking in patients from all over UK. Its outpatient department runs 5 all singing dancing EMG machines for 8hours a day. They EMG over a thousand patients a year. In UK all EMGs have to be done by fully trained neurophysiologists.

Head of this department told me fasciculations are routinely recorded in healthly muscles of healthy people.. He said biceps and muscles of the hands are popular places, along with calves, and they are not clinically relevant in isolation. He said as well as recording them as fasciculation potentials, the ones near the surface won't show up on your EMG, but patient can see them.

Concerning Tic vs Fasciculation he said that visually, and from patients description, it is generally easy for neurologist to tell the difference. Tics tend to continually affect one focal area only, not really move or become widespread. They often start in childhood staying in or around one zone. They are predictable in location, duration and rhythm. Fasciculations are Random, irregular described as a Bag of worms feeling, or popping popcorn, vibrations, rippling etc. As one neurologist said. ' under examination conditions the buggers always happen when you are not looking for them, best to sneak up on them, catch them out the corner of your eye. They also seem to shy away from the needle_, go into one muscle and they happily wink at you from another...tricky things indeed.'

They only take on significance if other signs are present. He explained it as follows. ( nothing to do with ALS) ...imagine a patient goes to his gp with a cough.

...... Patient 1 presents with a cough, non productive, no other symptoms, feels healthy can still run about no breathlessness. He is worried about the cough, it makes him panic a bit, drys his throat out so he coughs a bit more. Extensive testing shows nothing of concern. 2 years pass and still no other symptoms. Just a cough, good some days, bad others. Repeated work up still shows no pathology.

.........Patient 2 presents with a cough and breathlessness, some blood brought up. He has lost weight is very tired suffers nighttime sweats.,, A few weeks later while awaiting further tests he is rushed in with pneumonia, imaging shows in addition he has large shadow on left Lung. Additional masses detected in bile duct and patient has developed jaundice.

Clearly patient 1 and 2 have coughs but patient 2 has additional symptoms. Fasciculations are like the cough. They can mean nothing or everything, and how they are interpreted like the cough is by what company they keep. Importantly they are too general a symptom to be diagnostic on their own, I.e. like the cough.

People fasciculate, the increasing application of ultrasound demonstrates this. The drive is on to use ultrasound instead of EMG for some muscle disorders. This way they can scan larger areas, it is non invasive, cheaper and does not require doctors to carry it out. One major problem is that when used to detect fasciculations, they find them everywhere. ( EMG is hit and miss ). So to determine if fasciculations are an issue they are trying to devise programmes to quantify them. You don't get a black and white reading of. ...... NO FASCICULATIONS vs FASCICULATIONS, ........it is low vs med vs high. This kind of contradicts the neurologists that say fasciculations are rare out with the calves. If that was the case why the need for such low/ med/high indexes.

Concerning the idea that tongue fasciculations are usually of concern. I am not aware of any studies that have looked at this, I.e. studies in which compare healthy controls vs BFS vs ALS etc. Without such a study we can ask as many experts as we want, but we are not going to get a defined answer. It has not been evaluated. Instead we will get an opinion based on clinical experience. However in this case the clinical picture is very skewed. Let me try to explain.

Think about it logically... WHO GETS AN EMG of tongue. How many healthy people undergo it. It is not routine even in those having limb EMGs. Probably the vast majority of patients who have the bulbar region is examined are people who alteady have symptoms like slurred speech, swallowing problems. So the doctors data is skewed. They are basing their clinical conclusions on skewed data. So of course neurologists will say fasciculations of the tongue are bad news, that's because they probably don't often look or EMG the tongues of many normal people, and there is no real data on healthy tongues, and certainly not BFS tongue muscles to directly compare it too. Sweeping statements based on clinical observations of patients undergoing bulbar assessment due to prior slurring or speech problems, not very balanced data.

This forum has over 10 years experiences and drawing on its data you can say the opposite i.e. that fasciculations of the tongue are common in BFS sufferers. Remember this forum has seen more BFS cases in its time that most neurologists will see in their full working career.

Hx

[J4son]

Little lost,

Great post as usual. When I started reading about the coughing example, i said: Damned what coughing has to do with ALS? i've been coughing for 2 days. Then I understood that the example had nothing to-do with ALS

[Little Lost]

Hi J4son,

Oophs sorry about that. I had pretty bad cold when my neurologist was telling me that, so can see where you are coming from...still a little bit of adrenaline never did anyone any harm.

I always enjoy your posts and know you put a lot of effort into them, good point about defining what is normal twitching and what is excessive. I was told it was a range of a NORMAL phenomena, with mild twitching at one end, and BFS at the top end. You can slide up and down the scale but you can never leave.


I agree with your earlier comment about Matt's Mayo visit post. It was like someone putting a safety net under me at the time.

He probably doesn't realise the positive impact it had.

Hx

[Sadface]

I've got big thumping twitches and funny tongue sensation today! Right where it dents
Argh!!

[bobajojo]

Jason/ Helen,

I appreciate the comments about my Mayo post. So glad to hear that you read it and that it helped!

-Matt

[joycecaroll]

I had a clean emg of my tongue. Does this mean I'm 100% safe at the moment?

[Sadface]

If I had a clean one then yep, I'd take it as that!

I'd love to have am emg: if only I could afford private.

[joycecaroll]

Can EMG's be performed to early when you have twitches? I waited just under 2 months after my tongue fasciculations started. I read something about a 5 months phase in the early onset where emg might be clean. Does this apply to a muscle with fasciculations? If als, would it have been active for at least 6 months before fasciculations and there for not to early for EMG?