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Author Topic: Tongue twitching - why does the doctor say it's not normal?  (Read 2379 times)

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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #45 on: June 09, 2014, 03:27:05 AM »
MND as in ALS?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #46 on: June 09, 2014, 03:28:14 AM »
Yes.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #47 on: June 09, 2014, 03:30:49 AM »
Still, bare in mind the other 94% were fine. I wish I knew the ages of those 6%. I have a strong feeling they were all between 40-70.

Oh! I thought you meant that every year 6% of bulbar onset ALS patients started with twitches in the tongue? But no?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #48 on: June 09, 2014, 03:31:34 AM »
Those are not the odds you should be focused on though.

Factor age, rare presentation, the fact that you're a female (more common in males; 60%), and that it is a rare disease to begin with 1/50,000 with .03% occurring before age 40.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #49 on: June 09, 2014, 03:32:37 AM »
Lol, no. Bulbar makes up 25% of all cases. It's rare even in ***. Only respiratory and torso are 'more' rare. Limb makes up like 60% of cases.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #50 on: June 09, 2014, 03:35:33 AM »
With the type that you fear, I'll reiterate, you have about a 1 in 50 million chance of having. There are 33 million people living in the US, to put that number in perspective.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #51 on: June 09, 2014, 03:39:02 AM »
With the type that you fear, I'll reiterate, you have about a 1 in 50 million chance of having. There are 33 million people living in the US, to put that number in perspective.

Haha yeah... so there is a 6% of 25% of 0.03% chance that I have it? That's not much. 0.00045% to be exact.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #52 on: June 09, 2014, 03:44:57 AM »
If you count the twitching, yes. Somewhere around there. You can measure it a few different ways if you want to throw in general likelihood. Which is 1 in 50,000.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #53 on: June 09, 2014, 03:47:25 AM »
If you count the twitching, yes. Somewhere around there. You can measure it a few different ways if you want to throw in general likelihood. Which is 1 in 50,000.

You mean 50 million?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #54 on: June 09, 2014, 03:49:31 AM »
No, general likelihood of anyone having it is 1/50,000. But if you throw in everything else in your case it works out to close to 1 in 50 million. It depends where you want to start from. Lol. This is getting way too mathematical. It's low. Your likelihood is low. Obscenely low.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #55 on: June 09, 2014, 03:54:06 AM »
Haha yeah I get that now. Thank you för taking the time for this!

In summary:
1. It's rare for ALS to start with twitching (the study you refer to, was it only about bulbar onset, or ALS in general?).
2. A dentist or dr will see early signs today if I have ALS.
3. ALS is a rare deasese as it is, and bulbar is even more rare.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #56 on: June 09, 2014, 03:58:59 AM »
Referring to ALS in general.

It is rare to begin with *noticeable* twitching -- fascics still show up on EMGs preceding everything else (this is a type of twitch, but apparently not one easily noticed in most people).

A Neurologist will definitely see early signs (signs like UMN that we haven't even touched on here). A dentist or GP *might* see early signs depending on how intimate they are with the disease. You can definitely ask your dentist to look at your soft-palate (you could actually do this yourself and spare the trip; also check for 'vermiform' worm-like twitching. It's unmistakable).
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #57 on: June 09, 2014, 04:02:20 AM »
No soft palate and no worms! And I can touch my teeth and so on.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #58 on: June 09, 2014, 04:02:27 AM »
I just want you to turn back at the entrance to this deep, dark pit of anxiety before it gets really bad. Trust me, it gets a lot worse the longer you worry about this. A lot. Worse. Worst hypochondria with physical manifestations I've ever had, ever.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #59 on: June 09, 2014, 04:03:29 AM »
Er -- you want a soft palate, lol. To check it, look in your mouth with a flashlight and say 'ahhh'. Does your uvula (dangly thing) lift?
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