Carol's Story...you won't believe it!

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby whiteknighter on June 24th, 2003, 10:51 pm

Guys,

After trolling around this forum for a while I feel I'd like to comment on this one.

In my mind, you've already taken this WAAAAAAAAY out of proportion with the facts that we know about Carol - which isn't that much. You couple of guys have already posted 10 times more info than we know about the case in hand!

I'm not saying she doesn't have ALS, although I sincerely hope she doesn't, but we know absolutely nothing about this diagnosis do we? Or am I missing some detailed posts somewhere?

There are major claims being made and feelings hurt over one sentence that said 'EMG etc were all normal' and then another 3 months later that said the word 'ALS'. That's all we have guys, right there!!

Get the facts. Understand in detail what happened in Carols initial exam and EMG, and then EXACTLY what her diagnosis was and what it was based upon. Until you know this information, and much more, it's really completely pointless discussing it further.

It seems irresponsible to me to post thousand word essays on a particular case when we all we know is gained from a couple of sentences somebody wrote - accurate or otherwise.

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Postby Nole on June 25th, 2003, 1:13 am

It is sad that we cant get along when one of us is going through a tough time, who cares who said what and when...I dont, this hasnt changed my thoughts and ideas on bfs at all, and I am not going to waste my time fighting over this when there are so many other people out there who need support, not fighting...where did all the love go??
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Postby dave YY on June 25th, 2003, 1:48 am

I haven't been writing about Carol's dx, I've been writing about the wisdom of one person dictating what is sanctioned "fact" and not on a forum when even the experts have varying opinions.

Aaron, I know the BFS basics (but if you posted all that for the benefit of others, great). If you'll read my posts, you'll see we agree in principle, if not exact wording, on BFS.

You're very right Nole, and I'm not happy to be part of this. Please at least note my original reaction was to the atrocious treatment Carole received from some of the regulars on this board.

And thank you Renee, I can never resist such an invitation to return.
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Postby Arron on June 25th, 2003, 2:27 am

Whiteknighter, you said "Until you know this information, and much more, it's really completely pointless discussing it further."

The point is, a LOT of people got freaked out and started private e-mailing me and posting numerous new threads about being scared that they would end-up having ALS because of Carol's post. So there IS a reason to discuss it further and get the point across that BFS is not ALS and it doesn't turn into ALS, as so many people asked me about in private.

You also said, "It seems irresponsible to me to post thousand word essays on a particular case when we all we know is gained from a couple of sentences somebody wrote - accurate or otherwise. "

You are right, and I don't think the information is accurate. It isn't pointless when it is informing many lurking readers that there is no reason to get all freaked-out over one case that is probably not being relayed as well as it could be. So no, it isn't just referring to one particular case, it is showing how unique this case would really be if everything is as true as it was posted to many other readers that are all worked up over it. And trust me, I got quite a few private e-mails from VERY freaked out readers. So if it takes a "thousand word essay" to calm their nerves down.. then so be it. Maybe to you, it is "irresponsible" but to the many freaked out people that NEED to hear this re-assuring information, it is totally justifyable. And if it takes me a few minutes of my time to write this out, I don;t care if it takes 10,000 words... what's it to you anyway? You don't have to read it all... so move on.

DaveYY and I do agree on things about BFS as he has said, and whether someone wants to call it "facts" or "points in the direction of", it really doesn't matter because the bottom line is, there is overwhelming evidence that supports what we are saying. Whether it is arguing about it or not. This is a free country and we should be free to speak what we want. If someone doesn't like it, as someone said in an earlier post, then hit the "back" button and don't read it. It's pretty simple. I write a lot because I want to make my point very clear to other readers that maybe don't know the "facts" or where the information "points to" and are all freaked out over it. So it isn't wasted space and time to everyone... Besides, I type very fast...
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Postby jcavan4125 on June 25th, 2003, 6:52 am

This whole thread reminds of a "twilight zone" episode; where everyone is feaked out and starts fighting with each other about who was right and who was wrong and who did or didn't do what they should have.
There is no point attacking Arron; he spends countless hours on this board trying to reassure people who are freaked out every day about what is going on with them. He does this for no pay and on his own time in addition to having his own life!
Whether this person or that person has this information or that information regarding BFS, no one has all the information. If they did we wouldn't be here. Even the neurologists have different opinons. That doesn't make any of them more right or more wrong.
The important thing is that the information on this board be consistent with the current knowledge on BFS, and it is! Anyone who doesn't believe that should do their own research and find out, I have. Sure, Arron gives his opinon on various aspects of BFS such as the cause, but when he does he lets you know that it is his opinon not fact. If people disagree with him they say so and give their opinon, that is one of the reasons why this board is here.
It is human nature to point blame when something happens that challenges your concept of order in the world; but that balme is merely a way to distance you from the event. Arron obviously didn't cause Carol's ALS. BFS didn't cause Carol's ALS. Carol sadly, was initially misdiagnosed. My heart goes out to her and my prayers are with her! I'm not sure what is worse, being told immediately that you have ALS, or having several months of the possibilty that you might not have it, before you find out you do. I hope that I never find out the answer to that, and I hope that none of you do either!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby whiteknighter on June 25th, 2003, 8:04 am

Aaron,

My simple point is that maybe all those people who got freaked out should also have been reminded about what they're freaking out about - a couple of sentences, not hard facts or medical knowledge.

I understand your need to defend your position, but if we knew all the facts, that may not even be necessary. Wait until you know what happened, then you can discuss it instead of speculating on what may or may not have happened.

People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know? In my opinion that's the point that should be being made here - not that I'm right, and he's right, and facts are facts etc. etc.

And I'll stick by my comment about it being irresponsible. There are many comments here regarding Carol being misdiagnosed, having this, having that, when we have NO clue about the details.

Sometimes it's important that people that are 'freaking out' see the real problem that they have...it's not ALS...it's called health anxiety, stress, and hyponchondria. Fix this problem first by understanding what you are getting freaked out about - at this point in time very little.

Either way, this is not a normal BFS case and shouldn't be concerning most of the people here even if the worse case is true. I just think it's an inapropriate time to be bickering when we should sending our thoughts and prayers to Carol. A person says she has ALS, a disease that most people here live in fear of, and there are few words I see comforting her and asking for more details to try and learn from it...I guess I see it differently.

I'm not the boss here, and I'm done on this. Hopefully Carol can reply at some time and we'll get all the details. Until then perhaps at least some of you should hold-off on your verdicts.


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Postby dave YY on June 25th, 2003, 8:17 am

Well I aknowledge I was rather selfishly vitriolic and I'm sorry to those I offended. What can I say, almost five years of this myself and Carol's story still scared me a bit too... I do recognize how important Aaron is to this forum. I have no intention of becoming a regular here, either.

But, Carolmarie's story aside, what my two neuros told me doesn't quite jive with the opinions most widely held here, and it momentarily irked me that those views aren't welcome or valid, even if they come from two neuros who teach EMG at respected university hospitals, and interesting, both have had BFS on and off since med school themselves. (their views do agree on the important thing, that a clean EMG and clinical are very reassuring and strongly point away from ALS).

Regardless, the mayo study is the best thing going. Someone posted over at Braintalk (eeek!) a while back that he had a visit with one of the actual authors of the study, who said that even since they did the study they've kept track of even more BFS'ers and STILL nobody has gone on to have ALS.
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Postby dwl on June 25th, 2003, 8:59 am

I absolutely agree - I think we have to look at all information, including things which may not completely fit in with the majority's viewpoint.

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Postby j1 on June 25th, 2003, 9:53 am

Dave YY,
You have me very curious as to what your Neuro's say. Can you elaborate on that? Do they feel that there is never a "magic number" of time you must wait before you are in the clear? Can you let me know? Thanks.
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Postby dave YY on June 25th, 2003, 11:08 am

I posted my info with what my neuros said in this branch of the forum.

I'll read some replys but I'm not going to be around much longer, I don't like what dwelling on these issues does to me. Voice of experience.
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Postby Arron on June 25th, 2003, 3:58 pm

you ALL have valid points, be them whole or in part. I must say that I too was a a bit off the deep end when I was for some reason or another, attacked and scolded for offering someone who at the time (early-on in the stages) showed no apparent signs to warrant any worry. How do you think a man like myself would react? I'm a big boy, both in age and size. Have always been the boss of the companies I own and have ran in the past and I don't take kindly to being scolded when it really was un-called for. But I apologize for being a bit harsh.

DaveYY, it might be good for some readers here to see what your two neuro's said. It is the "cumulative" information that adds-up to a whole. If you share your information, it might certainly help other's to understand what is and what isn't, and help form a better big picture for us.

As for me, that's how I look at it.. the WHOLE picture. Not something one doctor says here, or what another doctor says over there. A LOT of doctors have different opinions on even the smallest things that are MUCH less complicated than ALS. That's why we usually get second and third opinions before going under the knife... You have to look at the whole ball of wax and make your conclusions from there.

If we listened to one person's accounts with BFS, it would seem that stress caused it and it always starts in the calves, until we see someone else's opposition that states they were on easy street and had no stress in their life what so ever and their twitches started in the eye lid and face.

It has been talked about over and over again that magnesium and B-12 and even Klonopin relieves BFS symptoms, yet for just as many times we have heard those statements, we hear at least as many (if not from the same people changing their minds) saying that nothing changed when they tried that stuff. Hell, I had a few Long Island Ice Teas the other night and all of my symptoms went away too! I didn't notice a single twitch! so that must be a cure, or a way to aleviate the symptoms too? Hardly.

It goes on and on with exercise, sleep, etc. Again, it is the whole picture we have to look at, not what one or two doctors say here, or one guy says over there. And as one of the posters said, even the original Mayo study is still being followed for further results, and you know what? the results are STILL the same. No change, which means no reason to freak out.

And WhiteKnighter - "People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know?"

That's because so many people had already freaked out over what was posted. It was too late! The damage was already done. No, we don't have all of the facts, only what she has posted, which she has in numerous other threads than the one you see in this thread, so yes, there IS more information we know, that maybe you haven't seen yet. Being that people had already freaked out over this situation, someone had to come-in and say something to to keep things in perspective and to keep these people calm and from getting worse. Maybe you don't realize just how "off the deep-end" some of these peopel get with fear. I have been there and I can tell you it is VERY easy to consider suicide over something as stupid as this, so there certainly was an urgency that I had to address. You, yourself might not have known this, but I, and several other's do. And I still get private e-mails from people that are STILL scared to death, which is OK with me. Everyone here knows that I am ALWAYS open to any e-mails, both public and private.

And as jcavan4125 put it. I do spend a lot of time on here, helping people any way I can to understand what we know about BFS (which ALL came from doctors from around the world) and helping them to stay calm and not get all freaked-out. I don't get paid to do this or to be on here. I run several businesses, many of which I don't disclose in my profile. Lets just say that along with what is in my profile, I am also the CEO of two other high profile companies and definately have many more things I could be doing with my spare time... spare time? What the hell is that? So obviously when someone says something bad about me or attacks me in some way, I respond. I didn't get where I am in life by being a big weenie and standing around with my finger up my butt. I am pretty well known for getting things done and taking care of people. Being that I have experienced the serious fear of the ALS scare first hand, I just want to put back what I got from this site. Trust me, I do have a million other things and places I could be at this moment, but it's good to be the boss and do whatever I want, whenever I want... and I choose to be here helping people in the same position I was once in and nearly lost my life over.
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Postby j1 on June 25th, 2003, 5:58 pm

Aaron,
You have helped me and I do appreciate it. I think everyone does. I just want to say, thanks. 13 months and counting...hoping for 60 years of twitching that goes nowhere - I would be 88 then (however, if it wants to stop at any time that is fine by me!!)
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Postby Arron on June 29th, 2003, 12:01 am

j1, glad to hear you are doing better. Hang in there, I think you'll be an old twitcher, just like the rest of us :wink: some day. Be well my friend!
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