Paper about not-so-benign fasciculations

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Paper about not-so-benign fasciculations

Postby rutra80 on December 15th, 2014, 4:37 am

In several of my posts I was mentioning a paper where it is stated that for a long time fasciculations may be the only symptom before ALS onset, I think I found a fragment of the paper I was referring to:
http://www.readcube.com/articles/10.1002/ana.410350324
My grandfather died on ALS. I have fasciculations since winter 2012/2013...
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Re: Paper about not-so-benign fasciculations

Postby TwitchyDoc on December 15th, 2014, 5:07 am

Yes, this is the infamous 6,7% done by Andrew Eisen. The other study he conducted later with another group of patients yielded 14%.

There is nothing more to be said about these studies...it happens. if it did not, we would not be here because of some twitches,
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Re: Paper about not-so-benign fasciculations

Postby garym on December 15th, 2014, 4:35 pm

anything is possible and can happen....not the normal presentation for als. the key to this study is that there was no data on whether people had normal emg studies when they presented. also, the authors stated that in their experience people who experienced fascics before als sx onset did not have normal emg studies.
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Re: Paper about not-so-benign fasciculations

Postby RobJ on December 15th, 2014, 6:52 pm

Garym,

I believe, hate speaking for everyone, but I believe, people realize that clean EMG means no AL$.

What studies do you know that proves this?

I have a personal experience with someone he eventually died of AL$ that I knew that twitched 5 years prior to his diagnosis. It was a landlord that noted my face twitching and we talked about it. I know he never had an EMG until close to his death but he did twitch, he had a gradual decline in strength, acquired pneumonia but was never diagnosed with AL$ until 3 months prior to his death because he never had an EMG. I'm guessing he had a very slow form.

If he was a statistic it could be that he twitched prior to AL$.

Show everyone the studies that show if you have AL$ the EMG will show it.
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Re: Paper about not-so-benign fasciculations

Postby misterjuanperalta on December 15th, 2014, 7:22 pm

In other words, people should live in fear w/o hope or no kind of certainty? That sucks.
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Re: Paper about not-so-benign fasciculations

Postby garym on December 15th, 2014, 9:19 pm

RobJ wrote:Garym,

What studies do you know that proves this?
- don't need a study to prove this, life does...normal emg means no disease process. the members on this site represent pretty clearly the correlation between clean emg = no als

I have a personal experience with someone he eventually died of AL$ that I knew that twitched 5 years prior to his diagnosis. It was a landlord that noted my face twitching and we talked about it. I know he never had an EMG until close to his death but he did twitch, he had a gradual decline in strength, acquired pneumonia but was never diagnosed with AL$ until 3 months prior to his death because he never had an EMG. I'm guessing he had a very slow form.

If he was a statistic it could be that he twitched prior to AL$.
he could be a statistic but since he didn't have an emg, we will never know for sure. But since he had a gradual decline in strength over time, he clearly didn't have benign fascics but as you suggest most likely a very slow form of mnd. Given the weakness, his fascics are obviously different than those that we experience.

Show everyone the studies that show if you have AL$ the EMG will show it.
can't, emg doesn't "show" als, it shows findings that lead doctors to suspect als. als is a dx of exclusion and there are specific criteria people have to meet to receive a dx of als after other things are ruled out. that said, neuros look for specific findings on emg that help them make a dx of als based on the total clinical picture a person presents with. If you show up at a neuro and test positive for fascics, fibs, positive sharp waves, etc., and show clinical weakness. doc might suspect mnd but there are many other conditions they would rule out first

Now, I have to say that stories like the one you mention above are typical of internet stories that needlessly scare people. You bring this story to this site and it seems relevant to our condition because your friend twitched for 5 years before being dx'd with als. In fact, it is clearly not relevant to our condition because as you mention he had a gradual loss of strength, no emg and no dx of bfs. To your credit, you mentioned the weakness and no emg, but I have to question you motivation for even telling the story on this site....what's the point? I have never once corresponded with you on this site, but my biggest rule is to do no harm to your fellow members. Again, I have to question the motivation of your post. Can you explain what the purpose of it is? I wouldn't want to misinterpret your intent.
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Re: Paper about not-so-benign fasciculations

Postby leaflea on December 15th, 2014, 10:41 pm

The Landlord very possibly, most likely had twitches at the very same time as loss of strength which is what would be expected. It does not sound like the twitching preceded loss of strength by much. How accurate is his recollection as he notices someone else's twitching and tells the tale of his own. His own tale included loss of ability. There is no separation in his case. He had twitching AND weakness. Huge difference! "Prior to diagnosis" is totally different than "prior to weakness." Think it through.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Paper about not-so-benign fasciculations

Postby TwitchyDoc on December 16th, 2014, 3:10 am

RobJ: No, he would not be a part of the statistic because only those with no clinical deficits on examination are included. Anecdotal reports have no value for us.

Why we still keep saying clean EMG=no ALS? It is a protocol for a suspected ALS to repeated EMG in 3-6 months!

In both Eisen's studies, several people had normal EMG with fasciculations only and progressed into ALS within a few months. The same with 4 out of 5 Walton study patients.

Eisen himsel said "Non progressive course is more reassuring than a single clean electromyography".

The bottom line is that a year or two seems to be a safe zone with nearly 0 chance of developing anything sinister.
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Re: Paper about not-so-benign fasciculations

Postby raindog on December 16th, 2014, 11:50 am

I take all these studies with a pinch of salt. Pointless, irrelevant and counter-productive.
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Re: Paper about not-so-benign fasciculations

Postby johnnythejet on December 17th, 2014, 12:08 pm

I also take these studies with a pinch of salt, and I take anecdotal reports about Landlords, etc. as meaningless as it relates to BFS. If we had a dime for every half-story mentioned on this site we could fund our own research to cure BFS.

As a newbie, we all want to read the silver bullet, comprehensive study/report, that proves we are 100% benign with everlasting life but that simply doesn’t exist. Why?....because BFS is a joke in the grand scheme of conditions/diseases and in most people’s opinion our resources should go toward studying the non-benign stuff. That being said, understanding the pool of information we have on aboutbfs.com is all we need. Not only do we have an enormous sample size of long-term twitchers to understand exactly how TRULY benign (100%) this is, but we’ve also collectively received a staggering amount of direct feedback from the world’s top ALS and BFS experts. We’ve visited and talked at length with the same doctors who study and diagnose those poor souls who suffer from the dreaded disease we fear. The truth is that if people like us go on to develop ALS, then those experts would be the ones diagnosing it. And what have those experts told us hundreds of times over?
“Benign.”
“You are fine.”
“Get lost.”
“Stop wasting my time.”
“You should seek counseling.”
“I’m filing a restraining order.”

There’s nothing left for us to learn about HOW benign our condition is. It is simply benign. Always has been and always will be.
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Re: Paper about not-so-benign fasciculations

Postby RobJ on December 17th, 2014, 7:03 pm

Johnny, you didn't read my post appropriately.

I'm also going to challenge you because for some reason, when someone on this sight mentions something that doesn't fit well with your thought process you automatically assume their information is bogus. You come on hot and heavy when someone disagrees with you, why?

You didn't read my post. You read others that interpreted my posts incorrectly. If you have collectively talked to the experts, show it. Put it in a youtube video and show it. Don't tell us. Show us. Your information is just as anecdotal as is everyone else's. You'll read a post that supports your opinion and that is fact, read another that doesn't and it's anecdotal.

List the worlds top AL$ and BFS experts....List them, don't tell us they've been listed. When did you talk with them? What did they say? Who did you talk with?

I'm challenging you to show us. I don't see the pool of information. I think this is the problem, people don't trust the seniors that say the same thing over and over and over again and the fact they talked to experts and there is no proof they did.

Show us!
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Re: Paper about not-so-benign fasciculations

Postby RobJ on December 17th, 2014, 7:14 pm

Garym,

You are wrong. You didn't read my posts appropriately, you've done this in the past. Why is it when someone disagrees, it's we are trying to scare people? I can assure you, I have no intention to scare. I'm trying to help. Trying to change it up. Your efforts aren't working.

You've taken snippets of my posts and placed them in space and then assumed I meant something I didn't say.

STOP telling us LIFE is my example or this site is my example. It's not working. Show the studies. Create a youtube channel, show the interviews with the experts...invite a neurologist for a question and answer session.........DO SOMETHING DIFFERENT!

Your words mean as little as mine. You know no more than I based on what you say. Show us!
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Re: Paper about not-so-benign fasciculations

Postby johnnythejet on December 17th, 2014, 7:58 pm

Robj-
I believe I read your post appropriately in my opinion but I understand that my response did not fall inline with what you wanted or expected. You are welcome to challenge or disagree with anyone and anything on this site. It takes some time for newbies to understand the truth, and some leave before ever understanding it. That's a common problem with the sometimes confusing information found online, this site, and the general subject is hard to grasp with all its complexity. It will help you to trust the long time members of this community, but I understand that can be hard to do. My post was not in response to your story or comments but simply a response to the hundreds like it. Everything repeats itself in this community and this topic, the study in question, your challenges, etc. have been dealt with, washed/repeated over and over and over again. Its not that we don't like anecdotes or ideas "if it doesn't fit my thought processes" but its simply a matter of disputing false ideas because we recognize the truth.

I wish I had the time (actually I don't) to "show you" what I've previously stated but I don't. That would entail me reading you a bedtime story of forum discussion every night for the next 6 months. I know the truth because I've actually read thousands of threads, and it took years to get there. Its one of the limits of this site. If you want to read for yourself every first hand account record of discussions with experts, and all pertinent details, then you gotta dig and dig deep. So you better get real friendly with the search function and put aside plenty of free time to get through all the content. It's a lot.

Also, lets put something in perspective here......you have repeated for myself and others to show you, prove it, put together a youtube channel, etc. Please realize that us vets don't get paid or what we do. I know gary as well as others have devoted countless hours every year for the past 10 or 15 years. We hang around to share the knowledge that we've learned from the great people on this site who have contributed. While I don't expect every person to simply accept everything I say at gospel, please realize its a bit silly to "press us" for better displays of data and feedback when we're simply here to help on our free time.
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Re: Paper about not-so-benign fasciculations

Postby garym on December 17th, 2014, 8:12 pm

RobJ wrote:Garym,

You are wrong. You didn't read my posts appropriately, you've done this in the past. Why is it when someone disagrees, it's we are trying to scare people? I can assure you, I have no intention to scare. I'm trying to help. Trying to change it up. Your efforts aren't working. I'm obviously not any good at helping people here, here's your chance

You've taken snippets of my posts and placed them in space and then assumed I meant something I didn't say.

STOP telling us LIFE is my example or this site is my example. It's not working. maybe they're not working for you, but the site has been pretty successful over the years Show the studies. researchers don't get published for researching benign conditions....finding studies supporting bfs is difficult and the ones out there have been endlessly discussed on this site. have something new, bring it to the site. Thanks in advance Create a youtube channel i donate my time to moderate this site even though I have no stake in it or any more worry about my BFS. I'll support anyone that wants or needs my help with anything regarding bfs. But I have 2 businesses, 2 kids, and a mother-in-law with cancer. Don't have time., show the interviews with the experts...invite a neurologist for a question and answer session.........DO SOMETHING DIFFERENT!You should pm JohnV about this, he has the power.

Your words mean as little as mine. you are correct sir, I'm not God, just a moderator You know no more than I based on what you say. maybe i don't know any more than you, enlighten me Show us!
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Re: Paper about not-so-benign fasciculations

Postby RobJ on December 17th, 2014, 8:23 pm

Garym,

Are you telling me that you've got nothing to show us? All those posts, all those words and you are making it up like others?
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Re: Paper about not-so-benign fasciculations

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