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Author Topic: Tongue twitching - why does the doctor say it's not normal?  (Read 1919 times)

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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #15 on: June 09, 2014, 01:40:01 AM »
You're approximately my age -- I'm a little younger. There is roughly a one in a million chance either of us have this at our current age. In the studies I'm referring to, those that had *notable twitching before weakness not a single person had, had a history of anxiety -- those that DID have a history of anxiety and complained of twitching first were found to all have benign twitching. Now, I actually know of a case when the person DID have a history of health anxiety, but there is ONLY one case that I'm aware of and, trust me, I've read pretty much all the internet has to offer about the persons afflicted and the disease itself. Our odds are stacked pretty f**king well in our favor. 
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #16 on: June 09, 2014, 01:42:13 AM »
A neuro looked at my tongue about 2,5 months ago. She said it looked normal. And then like a month ago I started feeling these occasional twitches.

Would she have been able to see fascis before I could feel them?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #17 on: June 09, 2014, 01:44:00 AM »
No, there is not. As I've said three times, twitching is a VERY POOR indicator of pathology. Some people WITH *** never feel twitching or notice it. Others do. Sometimes they do before, sometimes after. There are many, many variables. Some even experience paresthesia (although this number is extraordinarily few). YOUR general likelihood of having this is about .000017%. Even less for bulbar. Somewhere around one in 50 or so million.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #18 on: June 09, 2014, 01:46:29 AM »
I would like to say yes, but I can't be certain. Try tenting your cheeks and touching all your teeth and licking your lips. If you can do all of these the chances are astronomically in your favor. Occasional twitches mean nothing. Especially as I already know they're not the type that usually presents in ***. I know I'm using a lot of 'usuallys', but that's all there really is in ***. It's a poorly understood disease.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #19 on: June 09, 2014, 01:52:19 AM »
Look, these twitches will drive you mad. I've been there. Hell, I'm STILL there. You HAVE TO, HAVE TO, HAVE TO, assume you're healthy until you HAVE clinical weakness or begin slurring constantly. These twitches will very likely get worse. Much worse. Very quickly. If you do not get over this fear. I'm not trying to be crude, it is just the honest truth. Many people have been in your position, began worrying about ***, then had bodily explosions of twitching that takes even longer to get over.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #20 on: June 09, 2014, 01:53:45 AM »
I could to the teeth thing and the cheeks thing :)

I'm going to the dr today. If I ask him to look at my tongue, he would be able to se if I have bulbar, right? If he doesn't see anything I should be able to relax? Even if I'm just a month in with my VERY occasional twitches? He would not be able to see them sice they happen like three times a week.

Is three times a week to little for it to be ALS?

Sorry for spamming you with questions, you just seem to know a lot and I'm desperate.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #21 on: June 09, 2014, 01:54:47 AM »
Remember that FEAR of *** is common. Diagnoses of *** is rare. ESPECIALLY in our age group.

I'll also throw-in that it IS known that sometimes hyperexcitation happens in young people for no clear reason. This is likely you and I. Think about cartoons where the 'crazy' person or the 'anxious' person twitches. It's so common in people like us that it's a cartoon cliche'.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #22 on: June 09, 2014, 02:00:03 AM »
I understand. And yes. It would be exceedingly rare for twitches like yours to be found in ***.

If you ask him, he'll probably just ask you to do what I just told you. He can't be anymore certain than you without an EMG. Listen to me though, I know more about this disease than probably 80% of general practitioners (as it is a rare disease and not really in their field to worry about as they'll probably never see a case in potentially their entire career) and 99% of the community here (exceptions being ShawnW and Pan, likely a few I don't know too). You do not have any clinical sign of bulbar ***. No atrophy, infrequent twitching, wrong age-group, no weakness. You are fine. At this point you should literally be more afraid of being struck by lightning.

THIS is the rabbit-hole you NEVER want to go down (I know, I'm shouting at you from the bottom). I believe that THIS disease IS the pinnacle of Health Anxiety. Vague symptoms. Multiple presentations. Uncertain, but bad outcome. *** is the disease of the unknown. And that is really what motivates HA phobias. Not knowing.

MS and *** prey on the same symptomizations as hypochondriasis. This makes them extremely potent fears. MS can cause electrical feelings throughout the hands, twitching, paresthesia. Not only can it, it often does. These same things are common in anxiety. *** can cause twitching; also common in anxiety.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #23 on: June 09, 2014, 02:07:48 AM »
Okey. I'm trying to relax about this, I really am.

One last question? I would love to get your comments on this:

"The comment about ALS twitching not coming and going is very true, according to him. Once this muscle gets cut off, unless it reinervates, it continues to rhythmically (important, meaning steady and constant) send out these distress signals harder and harder and more frequently. "

So my fear is of course that I get occasional twitches because at this stage my tongue nerves reinervates. Would this show as occasional twitches? Or would I have persistent twitches for a few days and then it would go away as the nerves reinervates?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #24 on: June 09, 2014, 02:17:30 AM »
Rhythmic twitching is indeed the most commonly found in ***. The twitching itself has something to do with the re-enervation process, but it's uncertain how. I do not know that the statement, 'twitching becomes harder and harder' is accurate. Understand that *** is, again, usually very fast. Twitching is also thought to be due to cortical stimulation preceding the destruction of motor neurons. This is truly a game of 'usuallys'. Fibrillations are the 'distress signals' and only detectable by EMG. Fibrillations can VERY RARELY be seen (and you won't be able to see them without the aid of strobe-equipment). They are the contraction of a single muscle fibre. Fibrillation CANNOT be felt. I'll stress that FIBRILLATION and TWITCHES/FASCICULATIONS ARE NOT >NOT< the same thing.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #25 on: June 09, 2014, 02:19:48 AM »
Twitching DOES become more 'complex' in cases of ***, but this complexity will probably not be evident to the person experiencing it and detectable only on EMG. I would predict that fasciculations may be part of that 'complexity', but do not conclusively prove anything since they as well can be benign.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #26 on: June 09, 2014, 02:19:59 AM »
Thank you for your comments.

Are fibrillations what's found in ALS? Not twitching?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #27 on: June 09, 2014, 02:24:29 AM »
Twitching is found in some cases of *** (probably most, from what I've gathered). Fibrillations are present in every single case of *** and are a defining characteristic of its diagnosis (when wide-spread and of a certain variety; sometimes even with fibs and twitching it can be an impingement or other spinal issue -- neurologists, I guess, can tell the difference on the EMG machine; I do not know how).
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #28 on: June 09, 2014, 02:28:44 AM »
Do understand that even if you have every symptom of ***. Weakness, atrophy, everything, sometimes it turns out to be CIPD (treatable -- effectively 'curable', regular injections). Sometimes Lyme (curable). Sometimes Gravis (treatable). It is a diagnosis of exclusion and a rare one. That said, a neuro can usually suspect it and be fairly correct from the beginning. Especially with UMN signs.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #29 on: June 09, 2014, 02:28:50 AM »
Okey! I called my dentist about this now, and got an appointment in an hour. I'll let you know what she says about the twitching in my tongue. I do feel you probably   know more than she does about ALS, but still.
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