Please help--tongue fasciculations

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Re: Please help--tongue fasciculations

Postby TwitchyDoc on July 26th, 2014, 2:12 am

donnastar, interesting - you are not the first one to notice fasciculations in tongue after 3-4 years. I have read it happened in other member, including myself - exactly 3,5 years.
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Re: Please help--tongue fasciculations

Postby Neville86 on July 26th, 2014, 10:31 am

Part of it, is what they call in Psych, "selective attention" I think. If you're anxious about your tongue/body twitches, it makes sense that you would notice all all twitches and these would loom large in your mind (larger than they would loom if viewed objectively). In my limited time here, I've noticed two things: 1) everyone has twitches and these twitches vary and 2) these twitches bother people (emotionally). The emotional component cannot be understated. Without it we'd all be visiting the running forum, LEGO forum, bulldog forum, etc and not sitting here talking about twitches. Such is life. I think a good rule of thumb is to a) not get too freaked if a twitch doesn't occur with weakness b) check with your doctor c) stop self checking (you will always find something, bodies are noisy and always in flux) and d) get out and LIVE instead of of talking about this kind if twitch and that kind of twitch.

This forum seems to be split down the middle: people who have BFS and are looking for support and people who fear ALS. I don't think this forum does a whole lot for the latter group. There's too much info and the reassurance provided is I think more harmful after awhile.

Anyway, pot calling kettle black.:) I'm sure you're fine, Donna.
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Re: Please help--tongue fasciculations

Postby Pascal35 on July 31st, 2014, 7:39 am

Arkansan wrote:I feel the "twitches" in my tongue when my mouth is closed and the tongue is at rest. It will feel like a small quick little jerk, typically around the edges. I have them in spells, they will occur from time to time for a few weeks to couple of months and then disappear for a good while.



I have exactly the same feeling. It will only twitch once or twice though. After that while at rest it won't twitch.
I can create a twitch again only if I bend or press hard my tongue.
I read your posts and I thing we are at a very similar situation with several symptoms.
I have been in many Neuros and done several EMGs which were basically OK.
Everyone believes that I don't have anything to worry about and they think I'm crazy.
I hope they are right. At any case I'm into this twitching thing for about 9 months and even though I should have relaxed by now there are several posts from people who were experienced only Fasciculations and then diagnosed with ALS 2-3 years later and I'm basically freaked out. Can't relax at all.
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Re: Please help--tongue fasciculations

Postby Neville86 on July 31st, 2014, 1:07 pm

"Several posts"--where? What is "several"?
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Re: Please help--tongue fasciculations

Postby Pascal35 on August 1st, 2014, 10:07 am

I mean several reports of case studies. But ok the vast majority Is different
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 8:26 am

And again I'd ask you to reference these several case studies directly, please.
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Re: Please help--tongue fasciculations

Postby TwitchyDoc on August 2nd, 2014, 10:34 am

Neville, it is not a good idea to bring these studies here. YOu can google
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 12:19 pm

Twitchydoc--I guess my point was that I've heard of these studies too, and that the word "several" is perhaps not the right word.
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 12:22 pm

I feel like most of us could benefit from exposure response prevention therapy (MND being the subject). This analysis of twitches, twitch types, frequency, placement, etc is a pretty big waste of time.
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 12:32 pm

*and anxiety producing because for every bit of "safe" symptom you read there's some study examining the exception. Example: people with AlS have focal twitch that spreads is something I've read a lot, but then you read where a neuro says this is a Internet rumor and that als often presents with bodywide twitching. Same thing goes with hotspots, feel vs can't feel, weak vs strong, it's just a big waste of time to sit on here talking about this with a bunch of non neurologists who can't examine you anyway. Sorry to be a Debbie downer but this stuff is really starting to get to me. Like twitchydoc, I think as a supposed health professional you'd understand the kind of a) danger in talking medical talk online to people YOU HAVE NOT EXAMINED and b) how completely unethical that is. I realize you looking at videos and citing articles you've read in MED SCHOOL (should not be consumed by public). My uncle is an airline pilot in the US and he gave me this stat once: most pilots nap when on a long flight. As a NON PILOT and knowing very little about aircraft and having no experience flying I freaked out when I heard this. He assured me that with autopilot and an experienced copilot this is rarely a big deal. See what I'm getting at here? It's harmful for you to tell people what a "true" fascic is without them being part of your discourse. We are not your neuro buds, and for the majority of us it does us no good to hear the odd statistic or article that you the med student have read. My two cents.
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Re: Please help--tongue fasciculations

Postby Little Lost on August 2nd, 2014, 5:30 pm

I guess we all like to take different things from this forum. Personally I love reading Twitchydoc posts. I do not think anything unethical is going on here. He doesn't offer medical diagnosis, he gives his view.

I notice in these posts you complained about there being too much information on this forum and referred to the medical papers being discussed.. These papers and studies most often are brought here by non medical people . TD like myself and others on this forumn are trained to discect scientific publications, we do it daily. Should we just not say anything when someone is unintentionally misinterpreting data and spreading needless panic. on this forum

....Look at some of the panic ridden sweeping statements some people on this forum have made often based on an abstract from a paper in some neurological journal,. It is not their fault medical titles are becoming more dramatic. Then you read thei full version of the paper which they have posted the link to, you quickly understand how the medical terminology or statistics is causing the mix up.

Recent example, (though has been a long standing issue ).....someone posts that they had read how fasciculation can appear in muscles before weakness.......panic replies lots of them.....so others with a slightly more scientific background access the FULL article via pubmed and realises the statement is actually taken completely out of context. What is being said in paper is that fasciculation can appear in the TA muscle before weakness in patients ALREADY suffering from ALS probably due to the illness progressing and causing hyperexcitability........ I.e. NOT IN BFS suffers, but in ALS END STAGE PATIENTS. who were already crippled by the disease. The paper wasn't interested in fasciculation only in cortical hyperexcitability.

.....so someone who has read the whole paper realises that the original posters statement is fvery very wrong, and they haven't meant to cause panic, but they have,.........is it not right therefore to point out this misinterpretation, and put forward your opinion....or do you shut up and let others panic needlessly.....sit at home with the knowledge that lots of people are getting upset by a misinterpreted wrongly quoted articler......would that in itself not be unethical, or at least a bit *beep* to leave the post unchallenged. Kind of like your uncle explaining what he meant from his statement about airline pilots sleeping. Was he being unethical saying the statement in the first place, or was he wrong to point out what he meant by it. I personally thought it was a good bit of information.

I rely on the opinions and feedback from others on this forum. I think all the members bring their own strengths, and their advice has helped me through some dark times. and I am thankful to them all (including Twitchydoc).So each to his own but I do think you are going a step too far by calling him unethical.



Hx
Last edited by Little Lost on August 2nd, 2014, 6:21 pm, edited 3 times in total.
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Re: Please help--tongue fasciculations

Postby Little Lost on August 2nd, 2014, 6:04 pm

Oh and one other point......You challenge TD on discussing his opinion on fasciculation he sees on video,......saying he shouldn't comment on people he hasn't personally examined calling it unethical.....strange then that in a previous post you declare that most of us on this forum could benefit from " EXPOSURE RESPONSE PREVENTION THERAPY,.....and how do you know this when you haven't personally examined, spoken to or evenr seen us....pot calling kettle.
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Re: Please help--tongue fasciculations

Postby bobajojo on August 2nd, 2014, 6:29 pm

alright, alright, simmer down everyone! I learned long ago to ignore any sentence that begins with "I read somewhere that..." or any post where someone references something someone else read. Remember, this is a forum filled with health anxious people by the time these "stories" make it to THIS forum, they've been processed and misinterpreted though an extremely health anxious mind.
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 6:53 pm

You're right. My frustration with this crap and my constant anxiety that I am dying everyday overreacted and for whatever reason (prob cause he posts the most) picked on twitchydoc. I find twitchydoc extremely helpful too. I'm just really struggling with this as it hasn't let up yet and it's just worrisome. I'm sorry.
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Re: Please help--tongue fasciculations

Postby Neville86 on August 2nd, 2014, 7:03 pm

How do you live and love when you're constantly waiting for your symptoms to progress?! How do I do this?!!
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Re: Please help--tongue fasciculations

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