Fasciculatoins proceeding MND

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Fasciculatoins proceeding MND

Postby RobJ on July 10th, 2014, 11:54 am

http://www.ncbi.nlm.nih.gov/pubmed/3714060

read the links to other files.
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Re: Fasciculatoins proceeding MND

Postby mwagner on July 10th, 2014, 1:40 pm

Why, why, why are you resurfacing studies that will scare just about every new person on this board?

For everyone else reading this, please note that the cases in these studies are extremely rare. Please keep this in mind.

This is like finding the rare cases of people who had headaches and no other symptoms who turned out to have brain tumors, despite their doctors thinking they had migraines. While, yes, I'm sure it happens, there is absolutely no point in pointing out the extremely rare cases of the worst turning out to be true. Especially on a site where there is so much anxiety over a condition.

Please focus on this study instead. Zero people went on to develop anything: http://www.aboutbfs.com/artmayo.htm
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Re: Fasciculatoins proceeding MND

Postby christo on July 10th, 2014, 2:32 pm

What is your goal robj by submitting this link, please tell us ?
This is an old study, almost 30 years old, about one case, one atypical case. This study may eventually freak out some new twitcher, is it your purpose ?
You are the living proof that twitching alone means nothing since you have 20+ years twitching, so what ?
Why dont you try to help, instead of hurting people ?

To those who could be afraid by this, remember this board count around 5000 members. To my knowlesge, None of those who were diagnosed with BFS turned to be ALS.
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Re: Fasciculatoins proceeding MND

Postby J4son on July 10th, 2014, 3:26 pm

RobJ,

Most people here suffer from extreme health anxiety. Most people here received a benign diagnosis from a neurologists. So what are you trying to prove with these old studies? That our neurologists were all wrong when they gave us a benign diagnosis? You should search the archives and see how many people here visited the best ALS centers in the US an Europe like Mayo Clinic and others. they were all diagnosed benign immediately. none was told to wait till judgment day to be on the safe side. Read back the email of Dr. Eisen on this board. Notice how many times he insists on the fact that MND starting with twitching is extremely rare. Even in those rare cases he says that patients probably weren't properly examined.

You should be more responsible and think about the terrified newbies whom does not have yet the knowledge and proper background to put these studies in their right context.

To all newbies, trust your doctor, not some dude on Internet. Your doctors examined you, they know your case, they have seen many many ALS patients in their carrier. If they say you're safe so you're safe.
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Re: Fasciculatoins proceeding MND

Postby TwitchyDoc on July 10th, 2014, 3:37 pm

This is an extremely rare case but have you read it all? Was the fasciculation widespread, localized etc.? ... Sacrifice 30 bucks and you could know more ;)
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Re: Fasciculatoins proceeding MND

Postby garym on July 10th, 2014, 4:09 pm

news flash....runny noses and headaches may proceed mnd by up to 100 years.......have any one of you sneezed today??? If so, you might want to worry about a muscle wasting disease some time in the future!!!

BFS has never, ever ruled any of us out for developing mnd. It is absolutely possible that any of us could develop als, but there is also ample evidence that bfs does not develop into als! Muscles fasciculate due to denervation in als/mnd, once that process starts in als, it doesn't stop. After a disputed period of time between 8 months and a year, the muscles/nerves will show other abnormalities on emg. May not be enough evidence to prove als, but it will definitely show changes if there is something sinister at work.

Move along folks, nothing new to see here.....

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Re: Fasciculatoins proceeding MND

Postby garym on July 10th, 2014, 4:37 pm

few other things i wanted to add to this...I considered deleting this thread but let it stay, because it shouldn't be worrisome to any of us and if I delete it some might think that means it is....I also banned RobJ because he seems to be malicious with his posts, but then I thought I would let him slide one more time and rescinded the ban.

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Re: Fasciculatoins proceeding MND

Postby Ghayes420 on July 10th, 2014, 4:39 pm

Wow! And the 'A-Hole Of The Year Award' goes to......(drumroll).....

I may have excused your posting, Robj, and not felt compelled to comment until I did some research and discovered you are a twitcher for 20+ years! (So you claim). Wow! That makes this posting even more and more questionable in its motive. I also saw another posting from you providing reassurance to a fellow person with BFS. Basically the exact opposite motive from this posting, where you simply post a link to a scary abstract and then run away. This appears like schizophrenic behavior. Have you been seen by a psychiatrist?

I love a challenge. You seriously could have done much better than that if your attempt was to scare the crap out of most uninformed newbies and newly diagnosed people with generalized fasciculations. Why didn't you post the Walton Report from Singh or the one that just came out last year from Dr. Talbot? You could have tried much harder and done much better at an attempt to scare others instead of posting a story of ONE case from 30 years ago. Seriously, you have lost all credibility with your actions. Both with the attempt alone and with the attempt being so LAME.

For the newbies (and oldies), nobody knows the background on this case. Nobody knows the history of this patient. There was no protocol for testing for CFS at that time like there is today. There was little differentiation from PNH and BFS at that time like there is today. A well trained neurologist with years of clinical experience knows the difference between a case that needs watching and a case that just needs therapy for anxiety.

Everyone here in this forum has the same 1 in 1000 chance of getting MND in their lifetime before they die. A BFS dx, once secured, does not make your odds better or worse. See the neuro, get the dx, then move on with your life. Nobody on this forum has 4 years undergrad + 4 years med school + 1 year internship + 2 years of neurology residency + 2 years fellowship followed by X years in dx'ing neurological conditions in patients of their own. Those are the people you should trust. Not studies of rare cases that you are not qualified to understand to begin with.

I hope you feel your motive was successfully accomplished. Maybe tomorrow you will return as Bobj and begin reassuring others like you have before.

PS- Gary, I feel you made the right move by letting him stay and not deleting this posting. Nice work my fellow football friend. Let's see what happens from here.
A very proud fasciculator since 8/14/2011. :)
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Re: Fasciculatoins proceeding MND

Postby mwagner on July 10th, 2014, 5:08 pm

Well said Greg, as always.

Although I am trying with all my might not to google Talbot's study (and so should all the rest of you!!!).

Bottom line, your point is so profound: we are total laymen, trying to read and understand neurological studies, and letting them scare us over what doctors with lots and lots of schooling, training and experience are telling us.

Anyone who has had to do a study (I had to do a master's thesis in psychology) knows that your goal is to write about something no one else has really addressed so you can get published. So these guys found anomalies they wanted to report on so they could get published and say things like "benign fasciculations are not ALWAYS benign". Thankfully Mayo took the other approach, and decided to tackle BFS from another angle -> it truly is benign. I wish there were more studies like Mayo's, but in reality, they are probably old news in the neurology world. If every neurologist tracked every BFS patient from their first meeting to 30 years later, there might be an anomaly here and there (in Mayo's case - there weren't any), but I'm guessing the data would show that 99.9% of those diagnosed with BFS turn out to have BFS, plain and simple.

I am truly hoping that RobJ had some other motivation in posting this other than to be a big Devil's advocate in proving us and our doctor's opinions wrong, unless you're out of the woods like he is with 4+ years. Not quite sure what the motivation was, except that I have been following his posts in another thread and I think this is a follow up to what he was saying there...
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Re: Fasciculatoins proceeding MND

Postby J4son on July 10th, 2014, 5:10 pm

garym wrote:few other things i wanted to add to this...I considered deleting this thread but let it stay, because it shouldn't be worrisome to any of us and if I delete it some might think that means it is....I also banned RobJ because he seems to be malicious with his posts, but then I thought I would let him slide one more time and rescinded the ban.

Gary


I fully agree with your decisions Gary. Scary posts should be explained not deleted otherwise it will appear like if we were a kind of community living in a bubble and who doesn't want to face different opinions from what is commonly admitted.

RobJ, keep In mind that the purpose of this board is to help people whom most of the time (at least in the begining) are in a total panic regarding MND and ALS. The goal here would be more to help people accept their neurologist's diagnosis and move on in their lives, rather than to make them doubtful about their doctors.
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Re: Fasciculatoins proceeding MND

Postby johnnythejet on July 10th, 2014, 6:08 pm

Every few years, a member pops up with just enough knowledge to be dangerous yet seriously lacks the judgment and understanding to comprehend the basic issues at hand within our community. This member sometimes means well, is confident in his/her beliefs, and feels compelled to “open the eyes” of all of us who are being “patronized” or have our head in the sand. End result: the same half-stories and misconceptions from 5, 10, 20 years ago are regurgitated so we can all enjoy the exact same conversations and come to the exact same conclusions (aka the truth) as we have in the past. If you’ve been around the community long enough or dig deep enough, you’ll find this person, each with a different name, show themselves over and over again.

Enter RobJ.

Gotta love the abstract from 1986, lacking all the details to even begin to understand what is one of the rarest of rare cases. Make no mistake people, there is no case that hasn’t surfaced and been discussed/exhausted in past years. There is no study that hasn’t been through the ringer as well, many times over. Collectively we’ve visited and spoke to the very best specialists, with the most first-hand knowledge on BFS and ALS alike. These people have seen hundreds of actual cases of ALS, and studied them in every detail, including how the symptoms began. It has been those same specialists who have studied/examined us and dismiss us as something else....something BENIGN. This benign thingy will never turn into something sinister. Never ever.

Thanks to Gary for his ever present wisdom, and thanks to Gregger and the others for helping to clear up the issue.
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Re: Fasciculatoins proceeding MND

Postby RobJ on July 10th, 2014, 10:47 pm

u r in a bubble.

gary,
if im violating a forum rule ban me, dont threaten me...read ur post.
im not violating any rule or goal.

i was asked to prove a statement made in another subject that was closed.

im being told my data is inaccurate again..suggest u ban those. those are people that r not informing and u r well aware of that. lots more data out there that u r aware of

my intent is no harm. my intent is to inform.

too many r n denial. the only way to get over there fears is to b informed.

stop lying to these people that r suffering...its not real...its fake.

r u asking for more proof more info...

look at these posts because i informed facts not opinion....
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Re: Fasciculatoins proceeding MND

Postby johnnythejet on July 10th, 2014, 11:24 pm

RobJ wrote:u r in a bubble.

Not sure who "u" is, but we are far from in a bubble. Every remotely "scary" study or story has been thoroughly discussed in the past. You are speaking from ignorance. Read all the threads from the past 10 years, and inform yourself. At that point you might be more educated and accurate when you "inform" others.

RobJ wrote:gary,
if im violating a forum rule ban me, dont threaten me...read ur post.
im not violating any rule or goal.

I'll let Gary respond to you himself, but its common practice to ban those members who act maliciously. Some of your posts lead us to believe your intent is malicious. Gary hasn't banned you because he's given you the benefit of the doubt. He's a fair guy who knows 100 x's more about this stuff than you and most of us. Learn from him and better inform yourself.

RobJ wrote:i was asked to prove a statement made in another subject that was closed.
im being told my data is inaccurate again..suggest u ban those. those are people that r not informing and u r well aware of that. lots more data out there that u r aware of
my intent is no harm. my intent is to inform.
too many r n denial. the only way to get over there fears is to b informed.

If you weren't a newbie, you'd understand the distinction between informing the community of sound information and sharing links to stories of ALS with limited information and only half of the story. You are not informing, but rather spreading fear and making inaccurate conclusions based on your obviously very limited knowledge of the subject which stems from google searches and a few words with a neurologist 20 years ago. You are correct that people here need to be informed, which is why this site exists. What you don't realize is that you're among the worst people suited to be informing these people. I have no doubt your intentions are sincere, and that's consistent with most others like you we've seen in the past. Those who've spread the most unnecessary fear typically have good intentions, but lack the knowledge, judgment and critical thinking skills. You're not unique in that regard.

RobJ wrote:stop lying to these people that r suffering...its not real...its fake.
r u asking for more proof more info...
look at these posts because i informed facts not opinion....

Considering that everything we teach falls in line with true experts in the field, I guess you can consider those hundreds of medical professionals liars too? Or perhaps those experts who have examined thousands of ALS cases need to be better "informed" by your wisdom? Or are those experts in the field not the "Best neuros" as defined by RobJ? lol What was your criteria again? Please accept the fact that you know a lot less that you think. In a previous comment you mentioned "credibility"...yeah, well you've exposed yourself many times over as having little to none.
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Re: Fasciculatoins proceeding MND

Postby garym on July 10th, 2014, 11:37 pm

RobJ wrote:u r in a bubble. Uh, I'm not in a bubble....I'm in Texas

gary,
if im violating a forum rule ban me, dont threaten me...read ur post. I never threatened you, not my style and no need to threaten anyone....
im not violating any rule or goal.

i was asked to prove a statement made in another subject that was closed.

im being told my data is inaccurate again..suggest u ban those. those are people that r not informing and u r well aware of that. lots more data out there that u r aware of

my intent is no harm. my intent is to inform. thanks for the education, but I prefer to get my information from world class neuros

too many r n denial. denial of what, that bfs is a benign condition as supported by the collective experience of thousands of members here and neuros world wide? the only way to get over there fears is to b informed. i actually agree with this statement but fail to see how you are helping us be informed

stop lying to these people that r suffering...its not real...its fake. I've never lied to anyone on this board, and frankly I take offense to you saying that. not a threat, but next time you question my integrity you will be gone from this board for ever. I've spent way to much time here helping people to put up with that

r u asking for more proof more info...no thanks, I don't really care to hear anything else you have to say

look at these posts because i informed facts not opinion....
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Re: Fasciculatoins proceeding MND

Postby garym on July 10th, 2014, 11:39 pm

johnnythejet wrote:
RobJ wrote:u r in a bubble.

Not sure who "u" is, but we are far from in a bubble. Every remotely "scary" study or story has been thoroughly discussed in the past. You are speaking from ignorance. Read all the threads from the past 10 years, and inform yourself. At that point you might be more educated and accurate when you "inform" others.

RobJ wrote:gary,
if im violating a forum rule ban me, dont threaten me...read ur post.
im not violating any rule or goal.

I'll let Gary respond to you himself, but its common practice to ban those members who act maliciously. Some of your posts lead us to believe your intent is malicious. Gary hasn't banned you because he's given you the benefit of the doubt. He's a fair guy who knows 100 x's more about this stuff than you and most of us. Learn from him and better inform yourself.

RobJ wrote:i was asked to prove a statement made in another subject that was closed.
im being told my data is inaccurate again..suggest u ban those. those are people that r not informing and u r well aware of that. lots more data out there that u r aware of
my intent is no harm. my intent is to inform.
too many r n denial. the only way to get over there fears is to b informed.

If you weren't a newbie, you'd understand the distinction between informing the community of sound information and sharing links to stories of ALS with limited information and only half of the story. You are not informing, but rather spreading fear and making inaccurate conclusions based on your obviously very limited knowledge of the subject which stems from google searches and a few words with a neurologist 20 years ago. You are correct that people here need to be informed, which is why this site exists. What you don't realize is that you're among the worst people suited to be informing these people. I have no doubt your intentions are sincere, and that's consistent with most others like you we've seen in the past. Those who've spread the most unnecessary fear typically have good intentions, but lack the knowledge, judgment and critical thinking skills. You're not unique in that regard.

RobJ wrote:stop lying to these people that r suffering...its not real...its fake.
r u asking for more proof more info...
look at these posts because i informed facts not opinion....

Considering that everything we teach falls in line with true experts in the field, I guess you can consider those hundreds of medical professionals liars too? Or perhaps those experts who have examined thousands of ALS cases need to be better "informed" by your wisdom? Or are those experts in the field not the "Best neuros" as defined by RobJ? lol What was your criteria again? Please accept the fact that you know a lot less that you think. In a previous comment you mentioned "credibility"...yeah, well you've exposed yourself many times over as having little to none.


as always well said Johnny.

take care,
gary
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Re: Fasciculatoins proceeding MND

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