Tailspin--Tongue people who have seen a neuro please

[Neville86]

Ok, this morning a well meaning member said this to me over PM that only two people on this forum have had real tongue fasciculations.

Does this mean all of the people whose posts Ive looked at over the last two months who have had tongue twitching similar to mine--visible flickering in one spot--were all not "true" tongue fascics? Have any of you had tongue fascics confirmed by a neuro? Some of the posters who seem to have had similar symptoms to mine: bobajo (saw a neuro, said it was unremarkable), twitchydoc, twitcherhh (who I know saw a neuro and they said it was fine), nervous mommy, Christie, Jujila, momof2, May...there are more that I am having trouble recalling.

Anyway, can a few of you weigh in here. Is it possible that, as this member states, we've only had 1-2 members with tongue fascics? Am I--someone who has been identified via video as having "true tongue fasciculations" in the minority here?

Sorry, just having a bit of a freak out. I'm not far into this twitching thing and very vulnerable.

[TwitchyDoc]

Yes, mine were confirmed. The neuromuscular specialis told me that he had never seen that before but it does mean it cannot exist. Just unusual, probably generalized peripheral nerve hyperexcitability. The cause is yet to be discovered.

Too many people on this site freak out over normal tongue movements...

[RobJ]

My tongue twitched. Hasn't twitched in sometime. It just stopped. No idea why.

I used to hate going to dentist. Trying to explain it.......dentist telling me I should go for a neuro consult.

My tongue also has scalloping and large center crease, both detailed by dentist who said I should get a neuro consult....this was all very long ago.

[bobajojo]

This is perfect example of some of the BS that goes around on this board. Whoever told you that only 2 people on this board have had true tongue fasciculations is 100% incorrect. I also have tongue fascics every day witnessed by the Mayo Clinic. They didn't care one bit. Its all part of this benign condition.

I'd love to know who told you this to give them a piece of my mind.

[bouriquet30]

Hi,

I'm french et sorry for my english. I just want to tell you i'm 100% agree with Bobajojo. I've got true fasciculation on my tongue mayby 2 or 3 time per day. I'm able to provoke fasciculation whem i push my tongue on my teeth very strongue. And it's excatly the same fasciculation like the Twichdoc or Twicherhhh vidéo. I can feel and saw them. My tongue fascics started excatly at the biginning off this hell (20 month ago).
I can tell you, my sister have tongue fascics too. Less than me but sometime.
I hope this contribution will help you.

[jcmommie]

Hi,

I was momof2 on this board back in 2009 before I had to register again. I have had visible tongue fasics since 2009, so good news there that nothing has happened in 5 yrs.! I have a sensory component of burning tongue, sometimes even crampy feeling. This comes and goes, has been seen by others. Things have quieted down there since my neuro suggested it may be part of an atypical migraine pattern & prescribed an anti-epileptic (Vimpat) & low-dose amitriptyline.

[Neville86]

Mommie--

The fascics or the sensory symptoms have quieted down/part of migraine?

What scares me is there seems to always be an underlying cause for these tongue fascics....although maybe not. Matt and twitcherhh (who I assume is out there somewhere still going strong) both have similar symptoms.

[Little Lost]

I like yourself also take comfort in the fact that so many people on this site report tongue fasciculations. Out of interest why did the person who PM you say these people didnt have true twitching, i.e. whats the difference as long as tongue relaxed. My neuro saw mine clearly on two occasions a year apart. He was not concerned at all on either visit.. I even have fasciculations seen on my soft palate by both neurologist and ENT. They come in waves every few months and cause ear fullness and clicking in my ears. Again no one bothered. EMG twice in that area ( and yes I did manage to achieve complete relaxation for accurate recording), showed nothing else of interest, just as my neurologist promised me. This was 3 years ago.

Hx

[jcmommie]

Neville,

The sensory symptoms were very noticeable, like stabbing, burning & numbness which are very much improved. My tongue twitches were the kind I usually saw instead of felt, and my neuro said, "no more looking at your tongue!" If they are still there I really don't know. Every once in awhile I'll feel a twitch there or on my chin or lip. The one & done kind.

[elliottok]

The person who PM'd you and told you that only two people on here have tongue twitches is a *beep* -ing idiot. No offense to the many great and helpful members on this forum, but there are a lot of morons on here as well. Are there some people who just look at their tongue and see normal movements and think they're "twitches?" Yes, I'm sure there are. As for me, I know it's real twitching because I feel it just like I feel the twitching every where else in my body. And when you feel it in your tongue it's even more obvious than if it were anywhere else. My neuro didn't look at my tongue when I saw him, but even if he had he probably wouldn't have seen anything. The twitching on my tongue isn't constant - it happens usually only a couple times a day if that.

Anyway, I'm going to an ALS specialist tomorrow for my six month check up. I'll talk to him about tongue twitching and see what he says, but I feel very confident he'll say exactly what the doctors at the Mayo clinic told Matt.

[Neville86]

Hey everyone

So to my great dismay I've noticed a second tongue twitch has developed. This one, unlike the other, is something I can easily feel. It feels like an eye lid twitch, although perhaps not as strong and seems to be triggered by talking. I first noticed it yesterday after a long conversation with a friend. Today I noticed it again after talking for 50 min (I am a teacher). It's hard to describe: the one area continues to twitch (the fascic I described earlier) and this one is what I'd call--to borrow Matt's terminology--a thumper. Periodically, every 30 seconds or so, it "thumps" the whole area near the smaller fascic and is easily felt. Thing is, after speaking or strength testing (which I do often) it fires away so rapidly and it's quite a fright to look at. I've made promises to many, promises I have been unable to keep, to not look at my tongue anymore and I'm wondering I through all the constant testing and the checking, I am somehow making it worse. Can anyone weigh in here with their own experience?

[Neville86]

To add to my above post: I'm starting to wonder if there's any possibility that this could be mechanical. I don't know how (as Ive read all about the hypoglossal nerve and the fact that it's small/hard to reach/get damaged) but this twitch--which is very much like twitcherhh's twitch--seems to have come about, as I've stated after a week of self checking my tongue multiple times a day for oral cancer. Twitcherhh mentioned his twitch started after a similar episode of self checking, nervous mommy's twitch (which Ive never seen but sounds similar) started after repeated self checking. Even Docen seems to have--at one point in his career on here--at least been partially responsible for his tongue fascics (as bfshopeful said 'stop screwing with it)....anyway my two cents.

[bobajojo]

Neville,

Mine also started after self-checking. TRUST ME when I tell you that everything you describe is consistent with BFS and nothing more. I've had all kinds of tongue twitches for 3+ years. My neuros have told me it is expected with neural hyperexcitability. Its very very common on here. I myself have had several tongue twitches today as I do everyday.

-Matt

[Pascal35]

I think my tongue twitches when i irritated it. When i am stressed i bend it and play with it... After that i feel a small tingling twitch in the mid right side...
I have also noticed that it gets much better when i am hydrated.
The truth is that during last week there was really very rare twitching in my tongue so after a month of panic for bulbar i think its time to move on...
I guess in the tongue it must be the same mechanism like the rest of the twitching muscles even though it doesn't ht so often

[Neville86]

Thank you all. Matt, I know that one of your twitches induced by self checking was the pulling twitch. I haven't seen any of your videos and was wondering if you could tell me what that looked like?