been to neuro with my tongue twitch

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been to neuro with my tongue twitch

Postby TwitchyDoc on April 18th, 2011, 10:30 am

Well i just visited neuro who observed my tongue twitching wchich i could not feel! It was rapid flckering on the edge. The neuro seemed to be concerne and tell me about emg :/ Has onyone here had clear tongue fascic that could not feel? I am so scared now.
he agreed it is good that my speech is good and so is strenht. Sorry i post from mobile. Docen
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Re: been to neuro with my tongue twitch

Postby RunningBear on April 18th, 2011, 2:53 pm

I don't have much experience with tongue twitches. I understand your fear. Its quite a brave thing to see a doctor when you are frightened. My neuro was silent for an entire minute when they first examined the twitches in my legs, that scared me. Are you going to have an EMG? I hope you have one soon, since knowledge is power - Your CLEAN EMG will free you from this crap. Your speech is good and I imagine you can yodel with the best of us. You have been twitching (Body wide) for five years and on your tongue for one year with no weakness, you know this is not how ALS works. You are going to be fine, you DO NOT have an MND.
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Re: been to neuro with my tongue twitch

Postby DoubleD on April 18th, 2011, 2:56 pm

Try to relax. With bulbar als it starts with slurred or slow speech and/or swallowing problems. I'm not sure why he would tell you he was concerned. Plus the tongue twitches in bulbar do not start until AFTER other symptoms. Given your other symptoms and the fact that bulbar als is even more rare then als you are fine.

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" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: been to neuro with my tongue twitch

Postby TwitchyDoc on April 18th, 2011, 2:59 pm

Thanks guys. Well I am really scared as most tongue twitchers here feel their twitching in tongue. I do, sometimes, as well but I was shocked by finding it fasciculates and I do not know about it. If somebody has experience like this, PLEASE share with me. Sure only twitching on resting, silent tongue counts, not when you stick it out.
I must admit that after 4 years this is my worst period and I am affraid of the worst.
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Re: been to neuro with my tongue twitch

Postby johnnythejet on April 18th, 2011, 3:15 pm

TwitchyDoc wrote:Thanks guys. Well I am really scared as most tongue twitchers here feel their twitching in tongue. I do, sometimes, as well but I was shocked by finding it fasciculates and I do not know about it. If somebody has experience like this, PLEASE share with me. Sure only twitching on resting, silent tongue counts, not when you stick it out.
I must admit that after 4 years this is my worst period and I am affraid of the worst.

I have never had a tongue twitch, but if I did how would I know if I were also having twitches I couldn’t feel? There might be loads of people having tongue twitches without feeling them. I know I have twitches all over my body that I can BARELY feel, and I’m sure there are many twitches I don’t feel. Reacquaint yourself with the facts of your 4 year long twitching history….you do not have ALS.
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Re: been to neuro with my tongue twitch

Postby Barbie800 on April 18th, 2011, 4:41 pm

Please go to the Issacs World Chat Board. There is a video of someone there with Issacs who posted a video of their tounge twitching. It's crazy but it's not ALS. It's Issacs.. aka Periperhal Nerve Hyperexcitability. It may calm your fears.
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Re: been to neuro with my tongue twitch

Postby fox2run on April 18th, 2011, 5:51 pm

Ive have had some, I did see but not feel. Doesnt matter - not important. Is that neuro green or something?
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Re: been to neuro with my tongue twitch

Postby DoubleD on April 18th, 2011, 10:10 pm

I have tongue twitching AND pulling. Yes at first it freaked me out but my neuro said given that the tongue is one strong muscle LOADED with nerves its surprising more tongues don't twitch. I go months and then my tongue will act up. plus I have burning tongue which stinks. Just today my tongue had a slight cramp.

No worries. keep in mind that if you keep going to the neuro he will continue to run more tests. Its your time and money. His job.

You are fine. hang in there

DD
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: been to neuro with my tongue twitch

Postby TwitchyDoc on April 18th, 2011, 11:52 pm

Thanks. But keep in mind if your tongue move itself, it is not fasciculations. Fasiculations on tongue makes only tiny part (few millimeters) to flick, the tongue itself does not move.
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Re: been to neuro with my tongue twitch

Postby DoubleD on April 19th, 2011, 9:53 am

i have both.
" By this all men will know that you are my diciples, if you love one another." John 13:35

10 years BFS
24/7 twitches all over
Cramps, tingling, buzzing, and a host of other weird things
Until you own your BFS, you will never disown als
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Re: been to neuro with my tongue twitch

Postby TwitchyDoc on April 19th, 2011, 10:45 am

Just came back from neuromuscular specialiasts with 30 years of practice as head of clinic for neurodegenerative diseases (and even co-founder of neuroimunnology). I said that tongue fasciculations tend to be more likely MND as far as literature says..he said: that is not true, you are not first I see with it who does not have any form of MND. Check my tongue, I showed him my asymmetrical tongue when "flexed" horizontally - he said its still physiological, no worries. Checked my reflexes - all the same as 5 months ago - slightly brisker (not brisk) legs, the other alright.
He said I have increased idiomuscular irritability because tapping on my thenar produced few fasciculations. He said entirely normal with this condition. Did not see any reason for concern, repeated to get my thyroid checked (TSH, TH3...).
Even offered me to co-examine an ALS patient with him, kinda shock therapy.
I feel kinda relieved, not much unfortunately, but definitely better to know that tongue fasciculations (true ones on resting tongue) are not considered malignant by every neuro.
Thanks you all'
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Re: been to neuro with my tongue twitch

Postby johnnythejet on April 19th, 2011, 6:40 pm

I'm not one bit surprised of the good news, but glad you feel some relief. :)
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Re: been to neuro with my tongue twitch

Postby RunningBear on April 19th, 2011, 10:48 pm

Excellent news!! I am very happy to read the results of your latest visit with the doctor. Thank you for sharing and congrats.
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Re: been to neuro with my tongue twitch

Postby TwitchyDoc on April 20th, 2011, 3:50 am

Thanks.
Well just one thing that is kinda worrisome (not particulary for MND but for m.dystrophy and other diseases). If I percuss my tongue strongly and sharply with e.g. key, the fasciculations appear around the area of strike. Could any tongue twitcher try this? At least it points away from ALS.
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Re: been to neuro with my tongue twitch

Postby bfshopeful on April 21st, 2011, 12:12 am

you ever think that ur tongue twitches cause you fuc with it too much?
"It's mind over matter. If you don't mind, it don't matter."
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