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For brave only !

PostPosted: September 12th, 2003, 3:50 am
by Pole
Sorry, for that link, but I had to share it with somebody. I wonder what do you think? The good point is that it's info from 1986 so I think from that time something new would be proven in this theme.


There are no guarantees in life

PostPosted: September 12th, 2003, 7:12 am
We can all get ALS, there is nothing saying that if you have BFS, you will never get ALS. There is also no proof that the benign process lead to ALS.
There is really not enough information there and to be honest with you, this is the first case ever that I have heard of someone with BFS going on to have ALS. I guess you will have to consult your neuro.


PostPosted: September 12th, 2003, 7:37 am
by alive
I really wish you'd leave this site and do something more useful with your time.

There's no point in your scare tactics.

I've finally gotten over my fear and I understand that my condition is not harmul, it's only annoying. So your scare tactics don't work on me any more. (They did though, a couple of months ago when I was still vulnerable - hope that makes you happy!) However, there are lots of new people on this site, who are not convinced yet. They may not even have seen a neurologist. Why add to their agony?

BFS is absolutely NOTHING to be afraid of. It is common and if you speak foreign languages you can see that people in different countries are discussing these symptoms on the net. Neurologist after neurologist gives the same answer: no weakness,no ALS.

My heart goes out to all of you who are agonizing at this minute - thinking of death, how your spouses, your kids will manage without you. We'll DON'T! It's not worth agonizing about! You're not going to die (of BFS that is!!!).

Sorry about getting so angry - but mails like this REALLY upset me - since I know how much useless pain they will cause.

PostPosted: September 12th, 2003, 7:56 am
by Pole
Dear Alive

it's good for you that you are sure that your condition is benign. Propably you are right. Forgive me, but I will leave this site when I decided about that and not after you telling me to do that. I don't tell you what to do with your free time so you don't tell me also, please.

If you check my old posts you will be sure that I don't have any scare tactic.

I think that if I find something on internet I have a right to ask other BFSers what they are thinking about that. Just it, nothing more.

If you have such a good time and you are sure about benign type of your condition why are you still here? Of course you may do with your free time whatever you want :)



PostPosted: September 12th, 2003, 8:03 am
I am the worlds biggetst hypo and this does not scare me. There are people with BFS who probably get ALS, but it is like Arron says we are part of the general population we still have that slim chance of getting ALS.

Lets put this in perspective though, POLE you dug up an article from 1986, I suppose you found it out of a medical Journal, this is the only case I have heard of, and if there were more like it we would be hearing about it. The doctors still say the BFS does not turn into ALS, lets way the pros and cons of this yes it is fact that a man went on to get MND after 4 years of twitching, we do not know what his emgs were like or his neuro exams all we know is he was diagnosed with BFS for all we know he was misdiagnosed.

There were 121 people followed in the mayo clinic study none went on to develop ALS, none in a 32 year period, but you are going to take one man that we have no idea about and let that scare you ONE vs 121.

I am not losing sleep over an article from 1986.

We have nothing to fear but fear itself.

They also did not state for certain that the man went on to get ALS, there is a guy who is in really bad shape that posted on braintalk, I forget his name but he has PLS which I believe is a motor neuron disease but it is not deadly like ALS.

Pole, honey please stop you are getting like me, you are going to find some information out there like this, they are very rare casese but the fact remains that they do exist, stop looking for them, trust me, I started the week off in my car singing a song and minding my own business when I got a sudden crackle and could not sing, I cleared my throat and I was fine but I thought ALS, BULBAR, who the hell are we a bunch of doctors no we should not read this stuff.

I have a damb head cold, and now it is in my chest. My point is sometimes we are not happy unless we have something to worry about, and gosh if in four years I have MND after all of this well so be it. I need to live my life for today and if GOD is willing there will be a cure by then. ]

Life is to short Pole you need to stop all this worry.

I love ya man and do not want to see you doing to yourself what I have done to myself. If you search hard enough you can find more than just that article to make you scared.


PostPosted: September 12th, 2003, 8:07 am
by Pole
Kerri, you are right.
Sending that link I don't tell that it means that every BFS will change into ALS. I just want to know what other people think about that case.


PostPosted: September 12th, 2003, 12:12 pm
by fastpage
Pole: I don't think you are engaging in scare tactics. We have to be grown up enough to accept information from many sources without going into hysterics. I am not critisizing you Alive but I believe the more information we have the better off we are in the long run. I have actually found that learning more about ALS has made me more confident that I don't have it.

PostPosted: September 12th, 2003, 1:19 pm
by alive
We'll you may die tomorrow and the sky may fall - that's just as probable as BFS developing into ALS.

If you want reassurance, if you want to know what's really gooing on - then forget all the posts signed Pole or Kerri. That's my opinion - based on several months of getting support from this site. I cried, when I first found this site - and, unfortunately cried again, when they started writing about all the freak cases they found on the internet...

Pole & Kerri : why don't you report on a daily basis on all the tens of thousands of people on the net who daily tell of how they have realized they have a benign condition?

It is okay

PostPosted: September 12th, 2003, 2:12 pm
It is okay to be scared sometimes, and look you brought this article in here because you were scared and people showed you how silly it was, they looked up the artcle and clearly the guy had MND on emg.

You are okay and I am okay we do not need to be attacked though, I admire those of you who are not scared, but I do have health anxiety issue and the people on braintalk are right I am burried in it, I need a shrink, I am convinced I am okay one day and fall right back into the neck day. I need help.

I will get help and Pole maybe you should to.

But guys loosed up he is just reaching out for help, he is alone and affraid, he needed you guys to look that up and tell him that it was wrong. We cannot fight with people that are week we need to help them become strong.

I have met a great number of friends on the forum who know I am plum crazy when it comes to this crap, but they have helped me alot more than they could ever know, Pole I hope you find a friend who can tell ya when you are being CRAZY.

To the rest of you guys I know you mean well, and I am sorry you misinterpreted my post. I meant well by saying the article is from 1986.


PostPosted: September 12th, 2003, 2:21 pm
by fastpage
Well actually I agree with you Alive about some of those posts and I understand your gripe. I just think that there is no reason to be scared by most of this stuff. See Joe's post on the other thread about this link. Just ignore the posts you think might scare you or that bother you. There are several people I ignore on here (maybe the same ones you do) and quite a few who probably ignore me. There's no reason to be scared by any of this material. The overwhelming evidence based on the symptoms people describe here, is that no one has anything to be frightened of so how can anyone scare you-unless you let them?

PostPosted: September 15th, 2003, 4:17 am
by Pole
I see that you didn't check my old posts. You don't have to, but your opinion about me is very unjust.