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Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 8:27 pm
by misterjuanperalta
***Edited*** RobJ 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.

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 8:29 pm
by garym
johnnythejet wrote:Robj-

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.


Johnny,

I Couldn't have said it better, even if I tried. You and I have been here so long, that the internet changed but we didn't change with it. Now people assume I'm being paid to do this, which I haven't received one single cent from this site....we are all here voluntarily. This place was the only place on the internet a decade ago that offered any hope to us, and I've tried hard to give back to this site what it gave to me.......but these days I'm growing weary.

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 8:34 pm
by garym
RobJ wrote: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?


Not making anything up. Everything I state on this site, was either told to me directly by a neurologist or was from my research....not going to take the time to prove it to you, if my word isn't good enough, to bad for you. I've got other things more important for my life to do right now, sorry.

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 8:36 pm
by johnnythejet
garym wrote:
johnnythejet wrote:Robj-

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.


Johnny,

I Couldn't have said it better, even if I tried. You and I have been here so long, that the internet changed but we didn't change with it. Now people assume I'm being paid to do this, which I haven't received one single cent from this site....we are all here voluntarily. This place was the only place on the internet a decade ago that offered any hope to us, and I've tried hard to give back to this site what it gave to me.......but these days I'm growing weary.

Gary, I hear ya and I know how much work I've put into the site and you have done 10 times my effort. I can't ever explain you how grateful I am for you, Arron and JohnV as well as the countless others, and I have no doubt thousands of others are in tune with the same gratitude. The problem is that there will always be the occasional individual who is out of touch with reality, although those few people do plenty of damage to our patience. The challenge is not letting them ruin it for everyone else or distort our awareness of what this site means to so many.

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 8:49 pm
by garym
misterjuanperalta wrote:RobJ is a flamer. You're doing what he wants from us, attention. Ban him. Sorry, but tired of HIS BS.


mjp, it's to easy to ban people and I don't do it often....RobJ has actually made some good points, but i will not allow him or anyone to hurt people here. he has my full attention now.

take care,
gary

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 9:00 pm
by dARR
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

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 9:57 pm
by RobJ
DARR,

Where in my posts does it say what you say I say?

Are you reading my posts?

Re: Paper about not-so-benign fasciculations

PostPosted: December 17th, 2014, 10:40 pm
by johnnythejet
RobJ wrote:Where in my posts does it say what you say I say?

Finally, something I can work with.

Any Friends fans out there? Remember the episode when everyone finds out about Monica and Chandler?
Mon/Chan were messing with the Rachel/Phoebe because both sides knew what the other was up to....and Joey was stuck in the middle?

That was one of the funniest episodes for me, and here was my favorite bit of dialogue:

Phoebe: "They don't know we know they know we know. And Joey, you can't say anything."
Joey: "Couldn't if I wanted to."

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 2:57 am
by MarioMangler
How do we know you've seen that episode of Friends, Johnny? SHOW us!

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 8:16 am
by bobajojo
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.

viewtopic.php?f=8&t=17378&p=128609&hilit=mayo#p128609

-Matt

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 9:12 am
by crotwich
I totally agree with bobajojo. 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 Bart1: http://www.aboutbfs.com/forums/viewtopic.php?f=5&t=11487

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.

RobJ: 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).

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 10:18 am
by johnnythejet
MarioMangler wrote:How do we know you've seen that episode of Friends, Johnny? SHOW us!

Mario, you didn't read my post appropriately. Have you read all my posts? Where does it say I say I saw it? Your question and comment are anecdotal.

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 10:31 am
by Ghayes420
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)

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 12:27 pm
by RobJ
Ghayes,

All you have to do is list 6 of the top 10 neurologists you said you've talked to. You said that you've talked with them. Why can't you tell us their names, what you talked about, and when you talked to them?

Johnnyjet,

You said, I'm out of touch with reality. Why?

DARR,

You said I said things I didn't. Why?

Garym,

You see a pattern?

Re: Paper about not-so-benign fasciculations

PostPosted: December 18th, 2014, 12:38 pm
by crotwich
Do you exist RobJ? Can you prove it? I agree with misterjuanperalta, you are nothing more than a flamer...