Tongue twitches - can be felt

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Re: Tongue twitches - can be felt

Postby elliottok on September 6th, 2014, 9:27 am

Joyce,

For christ's sake would you give it up already? Good lord, woman. You've had a clean EMG on tongue, you've had multiple clean clinical exams (I think these are even more important than the EMG), what more do you want?? No one here is a doctor. No one here has given you an EMG or clinical exam. No one here can tell you that you're "100% okay." Only your doctor can do that, and he already did! You need to up your dosage and get over this crazy anxiety. You are fine, just like your doctor said.
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 6th, 2014, 12:37 pm

elliottok wrote:Joyce,

For christ's sake would you give it up already? Good lord, woman. You've had a clean EMG on tongue, you've had multiple clean clinical exams (I think these are even more important than the EMG), what more do you want?? No one here is a doctor. No one here has given you an EMG or clinical exam. No one here can tell you that you're "100% okay." Only your doctor can do that, and he already did! You need to up your dosage and get over this crazy anxiety. You are fine, just like your doctor said.



Don't know what to answer to that. I try my best.
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 4:33 am

elliottok wrote:Joyce,

For christ's sake would you give it up already? Good lord, woman. You've had a clean EMG on tongue, you've had multiple clean clinical exams (I think these are even more important than the EMG), what more do you want?? No one here is a doctor. No one here has given you an EMG or clinical exam. No one here can tell you that you're "100% okay." Only your doctor can do that, and he already did! You need to up your dosage and get over this crazy anxiety. You are fine, just like your doctor said.


I feel I can't trust the emg since it was done to early. The only comforting fact I have in this is that my fasciculations are not persistent.
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Re: Tongue twitches - can be felt

Postby J4son on September 7th, 2014, 5:09 am

joycecaroll wrote:
I feel I can't trust the emg since it was done to early. The only comforting fact I have in this is that my fasciculations are not persistent.


is that really the only comforting fact? What about the fact that you do not have slurred speech witnessed by others; that you do not have problems chewing food or swallowing your saliva; that you're not choking on liquid or food and that you do not have the symptoms experienced by 99% of people with bulbar onset MNDs in the beginning? What about the fact that it's been already 4 months and nothing really sinister happened? Aren't all that comforting facts too?
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 5:36 am

J4son wrote:
joycecaroll wrote:
I feel I can't trust the emg since it was done to early. The only comforting fact I have in this is that my fasciculations are not persistent.


is that really the only comforting fact? What about the fact that you do not have slurred speech witnessed by others; that you do not have problems chewing food or swallowing your saliva; that you're not choking on liquid or food and that you do not have the symptoms experienced by 99% of people with bulbar onset MNDs in the beginning? What about the fact that it's been already 4 months and nothing really sinister happened? Aren't all that comforting facts too?


Sure. But as I understand it the hyperexcitable phase could be as long as 7 months which means fasciculation onset might preceed weakness or other symptoms with that period of time. Please correct me if I missunderstood this.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on September 7th, 2014, 8:44 am

Joyce, you understood it well but you are missing the fact that in majority of cases, this phase does not last longer than a few weeks. And typically, the weakness is there, especially in the tongue. Hypoglossal involvement in bulbar mnd is severe because tongue is innervated just by this one cranial nerve - hence even a slight lesion produces issues. There are no other motor nerves supplying the tongue muscles to compensate the damage. Can you move your tongue side to side quickly? Touch the roof of your mouth, upper lip or even the tip of your nose? Then there is no weakness.
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 9:32 am

Ok well that's reassuring. Could the lenght of the phase have anything to do with age? The younger you are the longer it takes, etc.

Still, I find a lot of comfort in the fact that the fasciculations are suppoused to be persistent. I do read a lot of contradicting facts on this subjekt which worries me. So doctors claim the fasciculations can be sporadic and stop for periods. Any coments?

I'll stop writing on this forum if my trouble with getting over this bothers people. It's not my intention to be provocing, I'm just desperate and depressed.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on September 7th, 2014, 11:14 am

joycecaroll wrote:Ok well that's reassuring. Could the lenght of the phase have anything to do with age? The younger you are the longer it takes, etc.

Still, I find a lot of comfort in the fact that the fasciculations are suppoused to be persistent. I do read a lot of contradicting facts on this subjekt which worries me. So doctors claim the fasciculations can be sporadic and stop for periods. Any coments?


Of course the info is contradicting, the medicine is not an exact science - it is even more obvious in the psychiatry. Every author has his own experience, preferences and opinions and hence the textbooks differ. It does not mean one is right and the other is not.

An example from the internal medicine would be the dyspnoe (the shortness of breath), there are authors who claim there is no such a thing like psychogenic dyspnoe, yet today it is a quite known phenomenon linked emotional distress. I have had this occassionally since the age of 12..
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Re: Tongue twitches - can be felt

Postby Yuliasir on September 7th, 2014, 11:42 am

hahah, nice to read that some doctors believe that psychogenic dyspnoe is not existing :) I also had it and still have it and it could be really exhausting :( and I think physiological mechanisms are rather available for this symptomes.
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 11:51 am

TwitchyDoc wrote:
joycecaroll wrote:Ok well that's reassuring. Could the lenght of the phase have anything to do with age? The younger you are the longer it takes, etc.

Still, I find a lot of comfort in the fact that the fasciculations are suppoused to be persistent. I do read a lot of contradicting facts on this subjekt which worries me. So doctors claim the fasciculations can be sporadic and stop for periods. Any coments?


Of course the info is contradicting, the medicine is not an exact science - it is even more obvious in the psychiatry. Every author has his own experience, preferences and opinions and hence the textbooks differ. It does not mean one is right and the other is not.

An example from the internal medicine would be the dyspnoe (the shortness of breath), there are authors who claim there is no such a thing like psychogenic dyspnoe, yet today it is a quite known phenomenon linked emotional distress. I have had this occassionally since the age of 12..


Haha well that sucks for OCD's like my self.

But you feel confident in the fact that ALS fasciculations would not come and go with weeks apart? That's really all that I need to know to be able to relax.

Haven't had a twitch in my tongue since end of june. After the latest twitch two neuros have looked at my tongue and said they don't
see fasciculations, so obviously they're not constant in my case.

The MRI of my brain showed post inflamatoric lesions, maybe that's a clue to my twitching.
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Re: Tongue twitches - can be felt

Postby TwitchyDoc on September 7th, 2014, 12:34 pm

joycecaroll wrote:Haven't had a twitch in my tongue since end of june. After the latest twitch two neuros have looked at my tongue and said they don't
see fasciculations, so obviously they're not constant in my case.


Wait.. so all of this is because of a fasciculations (which might not have been actually a fasciculation) that happened 3 months ago? Joyce, you need to think rationally, this is a non sense. Even if you had a tongue fasciculations a few times per week, it would not be considered persistent. And even if you had persistent fasciculations, it does not automatically mean it is a MND.

But seriously, a tongue twitch that happened 3 months ago - stop it. Even my wife got a tongue fasciculations she could see (I think I posted about that some time ago).

Yuliasir: exactly...and interesting you have had this too. Definitely related to personality and anxiety levels. And yet many authors deny existence of this condition. And many do not. The context of the clinical examination is what matters.
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 12:38 pm

TwitchyDoc wrote:
joycecaroll wrote:Haven't had a twitch in my tongue since end of june. After the latest twitch two neuros have looked at my tongue and said they don't
see fasciculations, so obviously they're not constant in my case.


Wait.. so all of this is because of a fasciculations (which might not have been actually a fasciculation) that happened 3 months ago? Joyce, you need to think rationally, this is a non sense. Even if you had a tongue fasciculations a few times per week, it would not be considered persistent. And even if you had persistent fasciculations, it does not automatically mean it is a MND.

But seriously, a tongue twitch that happened 3 months ago - stop it. Even my wife got a tongue fasciculations she could see (I think I posted about that some time ago).

Yuliasir: exactly...and interesting you have had this too. Definitely related to personality and anxiety levels. And yet many authors deny existence of this condition. And many do not. The context of the clinical examination is what matters.


Thank you TwitchyDoc. I thought once you had even ONE tongue fasciculation it was a sign of onest om MND.
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Re: Tongue twitches - can be felt

Postby Yuliasir on September 7th, 2014, 12:39 pm

had it since I was a child :))) and considered as nothing really special :) but as you may know I am GAD since 6 years old :) so quite a link
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Re: Tongue twitches - can be felt

Postby joycecaroll on September 7th, 2014, 12:46 pm

I realize I might have been overreacted (might...) but I really thought there where no other reason for even ONE fasciculation of the tongue other than mnd.
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Re: Tongue twitches - can be felt

Postby elliottok on September 8th, 2014, 4:18 pm

joycecaroll wrote:I realize I might have been overreacted (might...) but I really thought there where no other reason for even ONE fasciculation of the tongue other than mnd.


Joyce,

What *you* think about fascics is not important. Where did you even get that idea? You are not a physician. You are not a neurologist. You have no experience or education in medicine or neurology. Why would you think that a fascic on the tongue was definitely a sign MND when your doctor already told you that it isn't? Why would you think you have MND when your doctor already told you that you are okay? A rational person, when told they're okay by an expert, accepts that diagnosis. There is no "might" - you absolutely have overreacted as many others here have. It's understandable at first, but after numerous visits to neuros who have all told you you're fine, it's time to get on with you life. As I've already told you - no one here can tell you you're okay. Only your doctors can do that. Thankfully, they've already told you you're fine, so knock it off with all the doubt and questions. Accept the diagnosis and move on with your life. I've already had lots of tongue fascics (and lots of others) today and I can tell you I won't be losing any sleep over it tonight!
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Re: Tongue twitches - can be felt

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