More questions

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More questions

Postby Felipe on August 10th, 2014, 3:18 am

After more than six months with fasciculatios, my lower lip has been twitching for two days. It is constant, never stops and it freaks me out. My other areas have never been this constant.

Has anyone got lip twitch that never stops?

How long does it take to rule ALS out? How many EMGs are needed?

Thank you very much
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Re: More questions

Postby misterjuanperalta on September 29th, 2014, 3:57 pm

Post retracted.
Last edited by misterjuanperalta on September 30th, 2014, 8:52 am, edited 1 time in total.
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Re: More questions

Postby trustme78 on September 30th, 2014, 8:08 am

misterjuanperalta wrote:I experience them often. The range of time to rule out ALS is between a few months to (5 years, per NIH). The latter is protection for doctors in ways. Every passed EMG is a good sign.

My symptoms: viewtopic.php?f=5&t=20814&p=156544#p156544


Sorry but a post like this does more harm than good. What brings you in the position to tell someone who is in fear that it takes 5 years and several EMGs to rule out ALS? That's clearly against the information on this board, clearly completely different to what I and so many others have been told by our neurologists. What do you want to achieve with a post like that?

6 months of twitching with no weakness (= good thorough clinicial exam) and a clean EMG and it's time to move on and away from ALS in my opinion and I think that's pretty much the opinion of everyone experienced on here as far as I can tell.

This makes me so mad. I can't imagine what a stupid answer like the above one would have done to myself if I had asked this question several months ago.
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Re: More questions

Postby misterjuanperalta on September 30th, 2014, 8:57 am

No harm intended. Plus, the 5 year idea was brought up by the NIH, not me. Anyway, post was retracted. FYI, I am experiencing similar symptoms, so obviously I wouldn't intentionally torture myself or others. I must assume censorship is in place in this board because certain comments are attacked. I'll refrain from scaring people further. Apologies.

trustme78 wrote:
misterjuanperalta wrote:I experience them often. The range of time to rule out ALS is between a few months to (5 years, per NIH). The latter is protection for doctors in ways. Every passed EMG is a good sign.

My symptoms: viewtopic.php?f=5&t=20814&p=156544#p156544


Sorry but a post like this does more harm than good. What brings you in the position to tell someone who is in fear that it takes 5 years and several EMGs to rule out ALS? That's clearly against the information on this board, clearly completely different to what I and so many others have been told by our neurologists. What do you want to achieve with a post like that?

6 months of twitching with no weakness (= good thorough clinicial exam) and a clean EMG and it's time to move on and away from ALS in my opinion and I think that's pretty much the opinion of everyone experienced on here as far as I can tell.

This makes me so mad. I can't imagine what a stupid answer like the above one would have done to myself if I had asked this question several months ago.
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Re: More questions

Postby elliottok on September 30th, 2014, 3:54 pm

misterjuanperalta wrote:I must assume censorship is in place in this board because certain comments are attacked.



Yeah, stupid misinformation is attacked on this board, as it should be. Juan, you're not a neurologist. You're not an expert in ALS or BFS - you're just an expert in BS. If you want to share your symptoms and/or what your trained neurologist has told you, then by all means do so. That's what this board is for. What this board is *not* for is spreading misinformation that you read somewhere on the internet. That's not helpful and only breeds confusion and fear. Neither one of my neuros ever told me "well, I think you're okay for now, but we really have to keep an eye on this for five years to be sure." That's total bull *beep*. You know what my neuros told me? They said "you're 100% okay - you don't ever need to see me again."
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Re: More questions

Postby misterjuanperalta on September 30th, 2014, 7:27 pm

And you're definitely not an expert in being respectful. I won't entertain your remarks.
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Re: More questions

Postby elliottok on September 30th, 2014, 9:57 pm

My goal isn't to make unhelpful people like you feel good about themselves. My goal is to get the truth out there so people who are lurking on here can stop worrying and get on with their lives. You probably didn't even graduate high school, but here you are on here giving people advice about complex neurological conditions. What a joke.
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Re: More questions

Postby misterjuanperalta on October 1st, 2014, 7:03 am

I graduated from college with honors in computer science. I apologized about my initial post and retracted it, yet you lash out with disrespect and inaccurate judgements.
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Re: More questions

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