Finding Fasciculation Clues to ALS

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MenschHaus

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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:
 
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,
 
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.
 
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.
 
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.
 
ShrkWhisper: 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.
 
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 bfsforum.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.
 
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!
 
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!
 
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.
 
***Edited*** ShrkWhisper is a flamer. You're giving him attention that is not fruitful. If I were a moderator, I'd think about banning him. Of course, he'd sign up as a different user and the problem persists. Plus, he'd say that we're misinforming others, lying, concealing information, etc. Just ignore him.
 
Rob-J the burden of proof is actually on you. Extraordinary claims need extraordinary evidence. Johnny and Gary don't have to prove anything as it is in the TEXTBOOKS that twitching without clinical weakness is benign and that a clean emg is always equal to no disease process. The burden of proof is on people like you who are trying to go against all the years of this website AND the neurology textbooks (Google search a neuro text book and look up fasiculation) Feels like it has been said a billion times but correlation is not causation. Someone can suffer from migraine since their teens AND get brain cancer in their 50s THIS EMPHATICALLY does not mean that all their migraines were somehow early symptoms of Brain cancer. If you want to argue that als fascics occur without dying nerves then that is AN EXTRAORDINARY claim and YOU need to produce extraordinary evidence. One survey that has been around since I came on the board 5yeads ago is not that extraordinary and Johnny and Gary are absolutely right to ignore your demands. Darr
 
Robj-I don't fully understand why you are going about things the way you are and I agree with the others that we don't have a single study or a youtube channel devoted to proving that twitching without weakness is in fact benign. But we do have this site, and as Johnny said, together we have seen the top experts in the world. I don't feel obligated to SHOW YOU all the posts on here detailing out the office visits but I'll bite and give you a sample. This was from 2012 where I saw Dr. D.I. Rubin at the Mayo Clinic. According to my neurologist at Mass General Hospital (who teaches at Harvard and specializes in ALS), Dr. Rubin is a "monster in the field of electromyography". This was the recap I gave just after my visit. Now, I apologize that I didn't bring a camera crew in with me so you'll have to settle for my written recap. Enjoy.-Matt
 
I totally agree with BobJazzy. This totally fits into what my neuromuscular specialists told me. And we are talking about three of them, who have a lot of expirience with ALS. Maybe they are not from Mayo or Mass General, but they have certainly diagnosed a lot of people with ALS. Do you know how many of them had fasciulations as a first sign? Only ONE... And this unfortunate women had from beginning a dirty EMG and she developed obvious clinical signs within SEVERAL WEEKS of twitching. If you are still wondering, please read this excellent post by BartOne: Conclusion: Yes, twitching may occur a first sign of ALS, but very, very rare (as prof. Eisen confirmed). And if you have already been cleared by an experienced neuro, we are talking about astronomically low chances. ShrkWhisper: Of course that most of us "newbies" are scared, do you have a problem with that? Something unusual is happening to our bodies, and we don't have a proper explanation for it (except that this is a benign condition). But your contradictory posts scare us even more and, to be honest, I am not sure what is their purpose (except provoking us).
 
Fella's I need direct evidence, sent to me specifically by Fed Ex overnight priority, with all the studies collected from members on this board over the years. Please show me and I will then show me and I and we. I will then give a call to my buddy George Lucas and see if we can at least get an animated series out of this.(The bra is on too tight bro)
 

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