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Author Topic: Tongue twitching - why does the doctor say it's not normal?  (Read 1120 times)

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Online Rasalhauge

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #90 on: June 09, 2014, 02:39:11 PM »
Because if something were wrong it would have been evidenced during examination. How long have you had this fear?

My fear of ALS hasnīt been all that long, maybe 3-4 months. Before that I was certain that I had Young onset Parkinsons. I donīt even know how I transitioned to ALS to be honest, it feels so silly since I know that all my problems could be explained by either anxiety or less malicious diseases than ALS. I always overlook that even if I had real atrophy etc ALS would still be low on the likelihood scale. But my mind is dead set on ALS being to only possible explanation to my problems.

I think I have a low acceptance towards statistics since my father passed away in an extremely rare and aggressive form of Plasma cell leukemia. This form was so rare that most doctors didnīt even know how to classify it. Because of his death in a disease that was close to statistically impossible I tend to reason that something like that will eventually get me too.
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Offline ShawnW

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #91 on: June 09, 2014, 03:28:17 PM »
Ok, that part about hoarsness really scared the crap out of me. That is exactly my problem now, I can talk without slurring (at least according to others) but my voice get hoarse and strained in no time. Could hoarsness come from anxiety too? Anyone with the same problems, i.e. notice a hoarsness quite fast (and sore throat accompaning that)?

Is there any cause for hoarsness that isnīt ALS or some other MND? Actually I know there is, but my mind just blocks out everything in order to promote my fear of ALS even further. Iīm literally at the point of wanting to end this. I was hospitalized recently and they gave me infusions of Anafranil (Klomipramin) and some drug against psychosis and after that little trip Iīve felt even worse. I really canīt go on like this anymore=(

Goodness, there are so many causes of hoarse voice that are not ***.  The two most common are reflux and allergies.  Anxious people often have silent reflux and hoarse voice.  I battle with hoarse voice often.  The reasons docs examine you and find nothing wrong with you is because they are focused on your body.  There isn't anything wrong with your body.  It is quite evident though you need psychological help.  That is what you need to focus on, techniques to deal with anxiety, counselor, psychiatrist etc.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #92 on: June 09, 2014, 04:10:19 PM »
Joyce, you need to stop googling. I promise you will not find anything more reassuring than what is outlined in this thread. Been there. Spent weeks reading about ___ and misconception surrounding it.

Had a neuro exam today. It went good! So that feels lovely.

The study is for my boyfriend, he want's to read it.
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Offline ShawnW

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #93 on: June 09, 2014, 04:24:28 PM »
Joyce, you need to stop googling. I promise you will not find anything more reassuring than what is outlined in this thread. Been there. Spent weeks reading about ___ and misconception surrounding it.

Had a neuro exam today. It went good! So that feels lovely.

The study is for my boyfriend, he want's to read it.

It wasn't a study.  And I would recommend that no one with anxiety read it.  His presentation was VERY atypical.  I hope no one provides you a link and wish it hadn't been mentioned.  Focusing on 1 in a million types of cases doesn't benefit anyone.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #94 on: June 09, 2014, 04:35:15 PM »
Joyce, you need to stop googling. I promise you will not find anything more reassuring than what is outlined in this thread. Been there. Spent weeks reading about ___ and misconception surrounding it.

Had a neuro exam today. It went good! So that feels lovely.

The study is for my boyfriend, he want's to read it.

It wasn't a study.  And I would recommend that no one with anxiety read it.  His presentation was VERY atypical.  I hope no one provides you a link and wish it hadn't been mentioned.  Focusing on 1 in a million types of cases doesn't benefit anyone.

I'm talking about the 6% study?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #95 on: June 09, 2014, 04:38:16 PM »
Shawn is correct here.

Don't look this up.

There is reason to think his may've been a bit more 'typical' than what was relayed, but still it won't soothe you to have the details. I only mentioned it to point out how ridiculously unlikely it is that Rasal be presenting bulbar. 
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #96 on: June 09, 2014, 04:38:57 PM »
Yes, still normal.

It's a very specific type of twitch when you're looking at bulbar-onset. And you WOULD have problems with speech before seeing these twitches (slurring).

Actually that's a bit of a lie. Contrary to everything I've ever read on this website, research shows twitches occur first. But very shortly before. You'd notice the slurring before the twitching, regardless. Unless of course you're looking in your mouth every day. Even then, I'm not entirely positive you'd see the twitching in early stages. They do appear on an EMG first, though. Again, this is a very short period of fascics before weakness. You don't have bulbar either way. I promise you, you do not have bulbar.

I want the link to the research showing this.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #97 on: June 09, 2014, 04:42:25 PM »
I honestly can never remember the name of the 'infamous 6% study'. If you're not extremely literate or accustomed to reading medical text I wouldn't read this either.

Joyce, you are fine. Really. You're displaying nothing to indicate ***.

Get a neuro-exam and MAYBE an EMG. You'll feel a lot better (although neither one appear to be necessary).
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #98 on: June 09, 2014, 04:44:34 PM »
Look, that information is relevant to people WITH ***. It was meant to aid in predicting disease process. It was never intended for anxious, twitchy, people to stress over.

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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #99 on: June 09, 2014, 04:45:28 PM »
I honestly can never remember the name of the 'infamous 6% study'. If you're not extremely literate or accustomed to reading medical text I wouldn't read this either.

Joyce, you are fine. Really. You're displaying nothing to indicate ***.

Get a neuro-exam and MAYBE an EMG. You'll feel a lot better (although neither one appear to be necessary).

I'm a medical student so thats why I want it :)
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Offline joycecaroll

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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #101 on: June 09, 2014, 04:51:14 PM »
. . .

You can find a link to it through AboutBFS. I won't tell you which post because there's already enough *** fear cycling around and I won't provide an easy link for those people.

At least this way they'll have to sift through a mountain of 'benign fasciculation syndrome' and read a thread discussing it before actually finding it.

Edit: Is what I was about to post.
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #102 on: June 09, 2014, 05:02:52 PM »
God that paper still freaks me out.
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Offline joycecaroll

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #103 on: June 09, 2014, 05:10:41 PM »
God that paper still freaks me out.

I don't get it. Was that the paper you were referring to?
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Offline thenomnomnomicon

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Re: Tongue twitching - why does the doctor say it's not normal?
« Reply #104 on: June 09, 2014, 05:14:55 PM »
Yes.
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