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Author Topic: Tongue twitching - why does the doctor say it's not normal?  (Read 1203 times)

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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #30 on: June 09, 2014, 02:32:57 AM »
Good luck man. If you'd like, PM me and I'll give you my cell number to text. I know what this is like and would do much to prevent someone else from taking their own trip down the hole. Goes for anyone reading too. Just throw me a PM. **** it, I'll field 'em all.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #31 on: June 09, 2014, 02:38:25 AM »
Btw, if the fibrillations are present in every case, wouldn't they show in my tongue now?
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #32 on: June 09, 2014, 02:39:46 AM »
Good luck man. If you'd like, PM me and I'll give you my cell number to text. I know what this is like and would do much to prevent someone else from taking their own trip down the hole. Goes for anyone reading too. Just throw me a PM. **** it, I'll field 'em all.

I would love to, but I live in Sweden so I think that'll be hard :(
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #33 on: June 09, 2014, 02:43:17 AM »
Yes, fibs show very early in ***. This is supposing you REALLY needed the reassurance and had an EMG (these are expensive without insurance).

You can always PM me with questions if you need to. I'm not the best at being reassuring, but I can give you the most detailed statistical and pathological information I have.

ShawnW is also a great guy to talk to about this (I seriously need to stop recommending everyone to him, his inbox is going to be flooded).

Edit: Yes, *probably* (exceptionally good chance they would by now), Just take it as a solid yes. There is always an exception in *** (but very, very few, So few that it is not worth consideration).
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #34 on: June 09, 2014, 02:44:46 AM »
Thank you so much for your great support!

Do I have to have an EMG to show fibrillations? They can't be seen with a flashlight?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #35 on: June 09, 2014, 02:49:21 AM »
Yes. You would need an EMG. Sometimes they are visible, but you wouldn't be able to tell them apart from a twitch and would not be able to see them without strobe equipment (they are EXTREMELY fine; imagine the size of a single muscle fibre). You definitely would not feel them.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #36 on: June 09, 2014, 02:52:47 AM »
But basically if the dentist does not see anything weird today, I should be able to relax? Wouldn't she be able to se SOMETHING if I had bulbar?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #37 on: June 09, 2014, 02:58:15 AM »
Early bulbar symptoms: twitching, weak soft-palate, difficulty swallowing, slurred speech. Now, if those symptoms suddenly begin in the next few days it's because you're now aware of them and it's anxiety. I feel like I sound weird all the f**kin' time, but everyone else thinks I sound normal. ShawnW also has speech issues due to anxiety. As well as two other users recently who have this fear.

Really, the only objective indicator that won't be corrupted by anxiety is a dropping soft-palate. But even then, sometimes I'm hyper-aware of my throat and it *feels* like its dropped. Your dentist will likely look at your soft-palate.

You seriously do not have a single clinical feature of this disease. I'd stake everything I own on your healthfulness. You are fine.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #38 on: June 09, 2014, 03:01:33 AM »
But the twitching can be the ONLY symptom at first and for 7 months? Or would there be twitching AND slurred speech?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #39 on: June 09, 2014, 03:05:04 AM »
It is rare for noticeable twitching to be the first symptom. Very rare. Fascics show on EMG before fibs, sometimes before pos sharp too. 6% of cases began with reported twitching. In ONE study. It would be supremely rare without accompanying weakness.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #40 on: June 09, 2014, 03:07:04 AM »
That ONE case of someone with health anxiety having *suspect* MND (not even ShawnW knows of this case because it just happened and I browse the ***forums way too much) she had slurred speech -- as pointed out by others -- with twitching.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #41 on: June 09, 2014, 03:15:06 AM »
Put it this way, of the thousands of users on this site and AboutBFS who had twitching, two have actually had suspect ***. One was 37. The other 27. The first had all kinds of issues (slurring, obvious clinical tongue weakness) and a poorly conducted 'clean' EMG. The other had slurring and, oddly, and it makes me think she has MNM, not ***, leg atrophy + clinical weakness presenting as an inability to hop on one foot.

*3, forgot the one. She had UMN signs though (hyperreflexia).

Essentially, had any one of these people had a thorough clinical by a neurologist, it would've been apparent in the very beginning something was amiss. And truly, if you want the ultimate peace-of-mind, talk to a neuro and request an exam.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #42 on: June 09, 2014, 03:19:00 AM »
But the 6% that began with reported twitching might have  had other symptoms as well, right? Why else would the get the diagnosis? And the twitching must have been pretty persistent, why else would you go to the dr? Unless you're a hypochondriac of course :)
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #43 on: June 09, 2014, 03:23:58 AM »
Well, to be fair, twitching is a pretty disturbing symptom even for normies.

It was a study, I have no idea how they signed up. I do know that none of the 6% in that study had a history with anxiety.

And those 6% were determined to be 'benign' before examination by a MND specialist, but after were concluded to have 'suspect MND' that later developed into obvious MND within 7 months (probably some time before).
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #44 on: June 09, 2014, 03:26:52 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.
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