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Postby Pole on July 8th, 2003, 4:38 am

Do you think that is a possibility that BFS is a kind of self-defence from ALS. I mean when you are attacked by ALS and your organism is strong enough to defend against ALS you have symtoms of BFS. Hyperexcitability instead denervation (so there is no atrophy) and fatigue instead weakness.
I think that way because one neuro told me: "Who knows maybe BFS is a mild version of ALS. When ALS is fully developing it is ...ALS and when it is not fully developing it is BFS" But he also told that it was only his theory and there was no reasearch suggesting that kind of ralation.

And what do you think?
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Postby KERRI on July 8th, 2003, 5:47 am

I do believe that BFS is a benign form of ALS, for some reason some peoples bodies attack against the breakdown of the anterior horn cells, while others succumb to ALS.

This is why researchers should look more closely at the benign population.

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Postby SCOTT on July 8th, 2003, 10:30 am

i think you are both letting your minds get the best of you...headache is not related to a brain tumor , backach is no form of liver disease , pain in the arm is not a form of a heart accack and bfs is not a mild als...there is not a single post on medhelp or any other notable neuro center even to suggest such a thing. just accept this is benign if you have been to a nerve and muscle disease dr. and had a emg..or none of the above but have had no weakness for 6 months you are fine

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Postby dwl on July 8th, 2003, 10:51 am

I absolutely agree! You may firmly believe that the moon is made of green cheese but that doesn't make it any truer. I think people should be very careful about posting elaborate unsubstantiated theories which will just frighten people needlessly. Let's try to get a bit more focussed on this stuff and confine ourselves to facts rather than opinions.
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Postby DanielDK on July 8th, 2003, 3:24 pm

Hi fellas,

I agree - I think it's time to forget the word "ALS", and it's alleged connection to BFS. BFS = a mild case of ALS? I dont think so - Als is a disease where you literally lose your muscles - that is, the nerves that are attached to every single muscle in your body dissappears and dies. Basically, if there would be ANY connection to ALS, we would at least suffer from a mild case of real weakness - which none of us do. Therefore - there is no connection!

Instead, I suggest you all relax a bit, enjoy the nice summery weather, turn on your television screen, and dooze off to the beautiful french landscapes you can spot in the background while watching "Tour de France". Now, there may be many of you americans out there protesting, and wishing France was in hell, but hey - are you really willing to drop your french toast in the mornings? :lol:


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Postby Arron on July 8th, 2003, 10:10 pm

I have to agree.... Pole, you need to get out more and quit dwelling and try to understand what some of us have been saying, in that just because we twitch, doesn't mean we twitch for the same reasons ALS victims twitch. Kind of like the headache theory, where just because you have a headache, doesn't mean you have brain tumors or if your stomach aches, it doesn't mean you have intestional cancer.

A disease is a disease that will run it's course and will show symptoms for a definate reason, like having a headach because you have things growing in your brain, not because you simply had a bad day or have a small chemical imbalance. BFS twitches are BENIGN and are in no way seen or suggested to even be remotely related to ALS twitches. We do NOT have dying or disconnecting nerves or atrophy, not even in the worst cases out there, so please quit scaring people with these suggestions that BFS is a mild form of ALS. There is not one single report that even slightly suggests that what so ever... just try to realize that BFS is benign, just like having migranes.. yes, they are a pain, but they are no way related to any fatal diseases... nor is BFS.
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Postby Asterix on July 10th, 2003, 7:02 am

Marcin, Kerry

I can understand and relate: for me too, one way to cope with the fear was to think about, speculate, research and, most important talk to and discuss my fears and ideas ("theories") with others. As we all know, it is very difficult to discuss those things with family members and friends.
The only ones who seem to understand our fears are members of web boards like this.
So I am always a bit disappointed whenever an interesting discussion
gets "scotched" by the regulars, just because it might contain potentially disturbing ideas.

On the other hand I do also very well understand the needs of many others who come here mainly to find reassurance and consolation, and are, of course, unnessecarily scared by such discussions.

Arron, I once suggested to set up a separate forum for those
who want to discuss such "taboo"-themes (i.e. statistics, 6.7%study,
"relation of BFS and ALS", "twitching before weakness" and so on) without the usual laborious eggshell-walk of constantly trying to avoid anything that might be scary/misleading whatever ...
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Postby Jenn311 on July 10th, 2003, 8:44 am

That's a great idea Asterix!
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Postby Yukito IBA on July 11th, 2003, 1:16 pm

Asterix wrote:I once suggested to set up a separate forum for those
who want to discuss such "taboo"-themes (i.e. statistics, 6.7%study,
"relation of BFS and ALS", "twitching before weakness" and so on) without the usual laborious eggshell-walk of constantly trying to avoid anything that might be scary/misleading whatever ...

I fully agree with you on this point.

I know that this is a support group and not a scientific meeting. I myself has longer history of twitching, but if I had heard about some bad possibilities just after 3 months twitching, I would have been in panic. Even now, I don't want to hear about anything bad when I am worrying about something.

But I am sometimes frustrated by the restriction here. I am a scientist, and it is highly stressful for me to see that a "theory" or "fact" convenient for us is selected, and free discussion or criticism on it is restricted by some reasons, even if it is only for the people's benefit.

To resolve the dilemma, the idea proposed by Asterix sounds a nice one. It seems better to separate theoretical discussions from mental support and reassurance. I hope and believe that we can help one another without too much decisive theories.


I want to add much thanks to the forum. Although I am mostly a "Read Only Member" (Is it a Japanese English?) of this forum, I got many important idea from this forum, for example, there are so many BFS people and BFS can cause tongue fassics. Also a report like "I also choked orange in this morning!" reassure me as much as an established clinical evidence.
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Postby Arron on July 11th, 2003, 1:49 pm

I understand the thought of making a "taboo" area for statistics and such, but there are some things to consider. Almost everyone brings-up some sort of "study" or statistic sometime or another when they are trying to make a point to someone that is scared, so you can't avoid it in regular posting.

There are already ALS web sites out there that ARE taboo, but a lot of peopel with BFS just keep going over to them anyway, trying to find information to support them not having it. It is scary to go to those sites, and a lot of people know better than to go visiting them, but they still do anyway.

One more point, I am just the "moderator". I have no idea how to run or maintain a web site. I didn't even ask for this job, it just kind of got thrown my way one day in an e-mail that basically said, "oh, by the way, you are now the moderator..." Which is fine, and I'll do what I can, but please don't go thinking that I asked for this job. I have 3 businesses and a family and a small ranch. I have plenty of other things that I could (and SHOULD) be doing. All I am supposed to be doing on here is making sure nothing gets out of hand and that posts are where they should be and that no one causes too much trouble, and that's about it.

I have only deleted ONE poster and he had upset everyone in a particular thread. I didn't cancel his membership. All I did was delete his posts and thread.

So, in a nutshell, if you think putting another place on here for people to stay out of if they are afraid, is in my opinin crazy, because you KNOW people are going to go snooping anyway. Besides, pretty much ALL of the data out there on BFS and on ALS points IN OUR FAVOR in a BIG way, so why hide facts, theories or whatever you want to call them, from people that they could end-up helping.

I mean, is a 1 in 100,000 chance of having ALS scary? Is it scary to people that a study showed that 6.7% of people presented with fasciulations alone, yet was indicated that they didn't have clean EMG's or didn't have an EMG to begin with and were in "the age groupe"? Well, that pretty much drops that 6.7% down to about zero if you've had a clean EMG or are younger than about 50 on average, so what's the scare about? And why do we need a new taboo place when the general concensus is always pointing in our direction with a BIG arrow? This is considering that we are talking about your average person with BFS... younger than the "normal" ALS age group. No real ALS symptoms such as weakness or atrophy, etc. and if someone did actually have that stuff, the last place they need to be is on some web site with a buch of people with benign conditions.

I think if someone is scared, any and all information that supports them is best if it is positive, and so far, with ZERO doocumented cases of BFS turning into ALS, and with the chances of actually contracting ALS being so low, and even lower with circumstances such as age, and no other apparent symptoms.. then what are we trying to hide from people?? What's so taboo about that?

If there were some scary facts out there. And I'm talking about facts here, not "opinions" from one person's doctor saying it might take 10 years to see if ALS will develop, then there might be a reason to have a "taboo" area, but with all of the information SUPPORTING that we don't have ALS, I think it would be frivilous and in injustice to other readers.

We also have a private e-mailing system for those of you that want to communicate without scaring other people or for more on, or off subject discussions. I get private e-mails on a daily basis, and sometimes several a day that I answer.

I think the main thing we need to think about is don't post anything that isn't backed-up by the "general" medical opinion. Just because one or two people get told by their doctor(s) that it could take a decade to rule-out ALS doesn't make it even remotely true. Especially when there are SO many other studies out there that point against that theory and support otherwise.

MOST people on here (from around the world) have been told by TOP neuro's that once they have had a clean EMG, (and especially after having a second one), it is SO unlikely they have ALS, it is hard to even measure.

Sure, anything can heppen. I might end-up with ALS tomorrow, but was it related to my BFS? That's highly unlikely. It would just be my unlucky day and my unlucky draw of the short straw is all...

As far as people saying stuff about "facts" or "opinions" being thrown around. Hello?? That's how questions get asked and how things get discovered! The only facts we have are through studies because someone had a question and an opinion about something.

One guy on here says he's a scientist. Well then, if you don't form your own opinions and look for facts, what are you even stuyding science for then and why is there even reasearch in the first place? Because people form theories and then discover the facts that either support or don't support it. That's why people have their own opinions.

We are humans, and human nature is to be curious. If no one likes "opinions" on here or doscounts "facts" as being un-clear, then lets just delete everything in this web site and start all over again saying BFS is a neurological disorder and leave it at that. Out goes the Mayo study, out goes the general consensus of the greater neurological community and so on, and we'll just quit asking questions and looking for answers. Is that what some of you want? I don't think so.

Opinions are needed to get new ideas. If you don't agree with one, then don't be a "quiet bystander". Get involved and let's hear your two cents worth that either supports or doesn't support a particular opinion...
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