Tongue Again ...

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Tongue Again ...

Postby Josmo on September 19th, 2013, 8:30 am

HI

I posted here few times its my 4 month into this , I have to say things are getting better I twitch once a while and I would get over this scare if it wasn't for few things !

- I still have brisk very brisk patellar reflex

- and the Tongue it is so so weird I speak fine no swallowing issues I only I don't know even how to call it so I will post video and maybe you guys can help me I know this is prob bfs but im scared has anyone experience something similar ?? when I hold my tongue on bottom of mouth its fine maybe a twitch once a while but when I move it little its starts this weird rippling fibrallations ??



http://youtu.be/1KuE-BCzcmE







PLease please help :)
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Re: Tongue Again ...

Postby tripsmom on September 19th, 2013, 2:12 pm

Hi Josmo!
I was lucky enough to get in to see a top neuromuscular specialist (one of his specialties is ALS and people come from all over the country to see him) just yesterday. My tongue has recently (in the last couple months) been doing similar things as shown in your video. It is pretty normal at rest, however, when I stick it out (especially stretched out as far as it will go) it ripples/twitches like crazy. My tongue is just one of the MANY symptoms that come and go with me, however, it's definitely scared me the most!

Both he and his resident did a thorough exam (including my tongue) and said flat out several times....you DO NOT have ALS. He wants to do a nerve conduction test in two weeks to look at the "hyperexcitability" of my nerves, however, he repeatedly said, "I see this all the time; it is not ALS....it is benign." By benign he again explained that my symptoms are completely real (however amplified by stress and anxiety), but will not cause death or any degeneration.

I hope this helps you :)
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Re: Tongue Again ...

Postby Josmo on September 20th, 2013, 6:22 am

Thank you so much im happy to hear you are ok ! I see not many people have stuff like that ... I was wondering maybe its only tremor of the tongue since my whole face act similar when hold in a certain position ??my tongue when I lift him up and try to hold shakes like crazy ?? Anyone else ??
Thanks guys ;)
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Re: Tongue Again ...

Postby tripsmom on September 20th, 2013, 1:26 pm

My tongue is the worst when I lift it up....also shakes like crazy! I quit even looking at it in different positions as it was stressing me out, and I'm trying to bring down my anxiety level :) Maybe try posting your question/video in the "Support Group" or "Questions" forums. I tend to scroll through those forums way more often then the other areas....maybe you'll get some other replies???
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Re: Tongue Again ...

Postby TwitchyDoc on September 20th, 2013, 2:18 pm

Oh my god, really? How many times have I (or others) written that tongue is NEVER examined for involuntary movements while protrusion. I will not repeat myself here, explaning fascicular movements and saying that this is entirely normal.
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Re: Tongue Again ...

Postby tripsmom on September 20th, 2013, 3:40 pm

TwitchyDoc-
So I'm new to this forum and the BFS diagnosis....I've read post after post about tongue fasiculations on here when my own tongue issues began a couple months ago (and scared me like no other symptom ever did). I totally get what you're saying, especially if you've said it time and time again (I see you comment/give advice/help so many), however maybe some people need more reassurance than others :)
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Re: Tongue Again ...

Postby Josmo on September 27th, 2013, 11:30 am

Thanx guys ;) well I hope it is normal but saw some tongues and ..... They dont do that , maybe its a tremor but the whole surface would tremor like that ? My tongue tremors really bad when i lift up in my mouth ! Same thing my whole face after having her opened for more then 20 sec ???? Any one else ??
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Re: Tongue Again ...

Postby Anxious guy on October 16th, 2013, 10:16 am

That looks normal.... I'm worried about mine as it just twitches on the tip if I move it certain ways or when talking ... I mean mine actually twitches like a leg or body twitch ! You can see it and feel it resting or not resting....
Been there 3 weeks constant... :-(
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Re: Tongue Again ...

Postby johnnythejet on October 26th, 2013, 10:58 am

Anxious guy wrote:That looks normal.... I'm worried about mine as it just twitches on the tip if I move it certain ways or when talking ... I mean mine actually twitches like a leg or body twitch ! You can see it and feel it resting or not resting....
Been there 3 weeks constant... :-(

Uh....and why would that be worrisome? That's straight up BFS, buddy.
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Re: Tongue Again ...

Postby Anxious guy on October 26th, 2013, 11:04 am

Really Jonny ? I guess being my tongue its really scared me... I started looking at it and wondering is that a dent on the too or just the shape of the roof of my mouth making a mark on my tongue just like I get teeth marks from pressing my tongue against my teeth... I think it's tmj...
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Re: Tongue Again ...

Postby johnnythejet on October 26th, 2013, 11:35 am

Yes, really. BFS all the way.
And seeing dents, divots, abnormalities, etc. in your tongue is boring news. Stop looking at your tongue and enjoy your BFS. :)
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