Misinformation from other forums

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Misinformation from other forums

Postby Arron on February 4th, 2009, 1:43 pm

I thought I'd take a moment to copy a reply I sent to someone regarding some fears of someone on another forum saying something to the effect of someone having BFS and ALS. here is my reply. Take it for what it's worth....


I have no idea what the post says or what people are reading onto it. What was said in what you sent to me though, which rings 100% true is; "we are not medical professionals and we do not have this individuals history and all it does is cause unnecessary panic." It doesn't get any more clear than that. You can't know a person's history or all of the details in a post on a forum.

As far as that line saying "BFS but still ALS" goes, one can have diabetes and cancer at the same time too but it CERTAINLY doesn't mean one causes the other or that they are even REMOTELY related to each other. This has been proven to be the same with BFS and ALS. They are in NO WAY, shape or form related to each other, nor are they triggered by the same mechanisms or even related in the KINDS of twitching between the two. ALS is NOT a twitching disease and the twitches are NOT the same between the two, period! This has been explained OVER and OVER again a zillion times on here, not to mention in "BFS in a Nutshell".

With the probability of hundreds of thousands of people having BFS, doesn't it make sense that SOMEONE is going to contract ALS at some point in time? Does that mean they are related just because ONE person has the two? No, it doesn't when tens of thousands of posters, as well as thousands of neurologists ALL say that BFS is in NO WAY related to ALS in any way, shape or form, and the last Mayo Clinic study proved that beyond a shadow of a doubt. So who do YOU want to believe?, ONE person's misunderstood post on some other site, or the tens of thousands of posters we've had that say otherwise, with the Mayo Clinic and EVERY neurologist backing all of that up?

Why people freak out over one misunderstood post like that is completely beyond me. I've said this before and I'll say it again, people need to quit trying to find that ONE person to prove us ALL wrong!! It ain't going to happen anytime sooner than someone finding a person that proves the common cold causes brain tumors. When is this BS going to stop? This is why I am rarely on the site anymore. I get tired of seeing BS posts like that where people take what little info they know about someone's post and blow it all out of proportion and then use that to try to prove everything we, the Mayo Clinic and EVERY neurologist have been saying for over a decade. It's time to put that to an end and move-on with the info we have and the facts we KNOW to be true.

Wasting your time on BS posts like that is doing NO ONE any good and it is doing nothing but causing undo stress and anxiety for people that don't know all the facts yet. It is a waste of time on EVERYONE's part, including mine to have to keep going in and setting the record straight. NO ONE is going to change the facts that BFS and ALS are NOT related, nor will one EVER "turn into" the another, period, end of story.

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Re: Misinformation from other forums

Postby raindog on February 4th, 2009, 2:19 pm

Another post worthy of a sticky :D
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Re: Misinformation from other forums

Postby Angst1986 on February 5th, 2009, 2:20 am

I agree with that. Look, there are so many theories about ALS, e.g. that is related to certain drugs used in doping, that it might be some sort of wrong reaction of the immune system, that it might be caused by certain viral infections and so on. These are all weird theories, none of them have been verified and I think that most of them will be proven wrong eventually. In 5 years, in 10 years, maybe in 50 years. But: NONE of the websites where you can find these theories EVER mentioned that ALS might derive from BFS or that they're somehow related. If there were at least 5 or 10 patients who experienced BFS and then got ALS, the fact would be included in all those weird theories.

I mean... if you search hard enough and really want to believe it, you WILL probably even find forum posts, information etc that suggest that ALS is contagious or something, or at least you'll interpret it that way.
"Fear is only in our mind,
but it's taking over all the time."

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Re: Misinformation from other forums

Postby nervousguy1 on February 21st, 2009, 7:28 pm


I think you clearly stated this in one of your older posts;


I guess some people are filled with so much anxiety that they no longer have the ability to think rationally.
All they think about is; oh no! i have twitches.. it must be ALS because it has twitches as a symptom too!
Remember the headache > braintumor comparison?

I wonder why BFS-people are so obsessed about als.. i mean, they have about 50% chance that they will, at some point in their lives, develop cancer and die from it..
Links of interest :

Why you don't have ALS part 1

Why you don't have ALS part 2 :

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Re: Misinformation from other forums

Postby vanislegirl on April 22nd, 2010, 1:33 pm

Thank you Arron....I can't imagine how frustrated you must be after all the time you have given to this site, and to STILL be addressing this issue.

All I can say is ....if you obsess about something all the time, eventually you just might attract enough negative energy around it to actually GET IT!!! Maybe you want to GET IT, so then you can say to everyone..."see, I TOLD you I was really sick!!!" Go live life....it's short, but it's fun!!!
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Re: Misinformation from other forums

Postby Christian_88 on April 27th, 2010, 4:53 pm


So well written by you-! :D

I mean I am sure there are thousands of people who eat Jelly beans.....who come down with fibromyalgia-!

Does NOT mean...eating jelly beans "causes'...fibromyalgia! :lol:

Just remember the old medical axiom---"Correlation does not mean causation"-! :!:

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Re: Misinformation from other forums

Postby Aviationrocks1 on May 13th, 2013, 11:58 am

So very true! My last doctor told me "I cant promise you're not going to get ALS at some point in your life, I'm not God, but you don't have it now."
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Re: Misinformation from other forums



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