Twitching Away

BFS Online Support Group

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Postby Brian_B on September 6th, 2003, 1:12 am

my friend with BFS that a neurologist said before that even know he "knew" all the literature and "knew" all of the research and facts, he is still human and still gets the doubts of thinking its ALS even though he should "know" its not.

we are all human, even though we all know the facts we are still open to the human doubts about things.
"The only thing necessary for evil to triumph is for good men to do nothing"
Edmund Burke
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Postby Arron on September 6th, 2003, 1:52 am

fastpage said; "Anthony is entitled to all the support you can give him"

Calling someone you don't even know a liar isn't much of a way of showing support...

"There is no reason to believe he is a neurologist and several to suspect he is not"

There is also no reason to NOT believe he is a neurologist...
Why is that such an outlandish thing to believe? You know what sounds outlandish? What if I came-out and told you I was once a well know record producer / recording engineer back in the 80's and 90's and had over 100 albums to my credit, and several of the albums that I worked-on won Grammy's and an Emmy Nomination for a TV soundtrack I did for the NOVA series on PBS, (we didn't win) and that I served on the Grammy Awards board ( NARAS ) for 9 years, would you doubt me and call me a liar too? It doesn't seem that anyone knows Anthony, just as no one really knows who I am either, But what I said about me IS true, I just don't talk about it much... that was another life time ago and now I enjoy doing other things for fun and lukerative living. Maybe Anthony is a neuro and just want's a little support because he has health anxieties about himself. We don't need to call him a liar though.

You said there are several reasons to suspect he is not a neurologist. Why is that? Maybe he's not quite a neuro and is getting ready to graduate med school? Maybe he's a rookie, green horn neuro and doesn't have the experience yet? Maybe he's just not agood writer when it comes to typing? I don't know... I'm just throwing ideas out there because I'm puzzled why some people just can't believe him UNTIL he proves otherwise. You're supposed to be innocent UNTIL proven guilty, not the other way around... show me something as to why we shouldn't believe him and maybe we'll see your side of it.

Even if he is making it up, we already know the general consensus of the mass majority of combined medical informatin on this stuff, so even if some "quack" comes in here spewing crap about what he may or may not know about BFS, who cares? Anthony didn't say any opinions really, he simply said he was worried about his own twitches. Can't a doctor be worried about himself and have health anxieties?

Maybe you weren't trying to come across harsh, but to me, calling someone an outright liar isn't exactly being kind and supportive. It's more like fighting words. I mean, if someone said I was a liar, I'd be pretty ticked-off. I certainly wouldn't take it kindly and accept someone's "support", after they called me a one...

This thread is starting to get way off track. Let's not worry about who, who is, or what someone does for a living, and not call people we don't even know, liars. That's not very friendly or supportive. If you don;t believe someone, just blow it off. No need to come out and attack someone like that. Let's keep it a little more friendly, OK?
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Postby fastpage on September 8th, 2003, 1:00 pm

If someone came on here and said he was an accountant but wasn't, I wouldn't care. If someone came on here and said he was a librarian but wasn't, I wouldn't care. If someone came on here and said he was neurologist and there was no reason to doubt that statement, I wouldn't care. But if someone comes on this website of all places and says he is a neurologist and there is every reason to doubt that, I care very much. In fact, there are a couple of regulars on this board who I am sure are not what they claim to be but I have kept quiet because there was no obvious harm (so far ) caused by their duplicity.

I would have thought some of you, especially those who go into hysterics everytime something slightly questionable comes up on this board, would understand the tremendous harm someone can do under the false auspices of being a neurologist. I would have thought some of you would have learned something from your experiences earlier this summer.

I am not going to go into the reasons I believe Anthony is not a neurologist as that would just be seen as another callous, personal attack. I think those reasons are obvious, especially to someone like you Arron. I will just remind the group that there are millions of people on the internet. Some of those "people" make a hobby out of seeing how much harm they can cause to others. Those people inevitably show up on any website. They will be here as well and you better be looking for them. I am not saying Anthony is one of them but I could invent a persona tomorrow, register as a new user on this site and have half the group ready to jump off the nearest bridge in a day.

My concern is for the people already on this board. Admittedly, tact is not my forte, perhaps due to my background. Maybe I should have said "Please forgive me but I have some doubts that Anthony is a neurologist and if that is true, I worry about the effect he will have on some members of the group". Unfortunately not my style. Neither is the "holier-than-thou" approach of a couple of the "I feel your pain" crowd. As I said earlier, a little more pragmatism and little less sensitivity lecturing from the more pious members of this board might be useful.

I sincerely apologize to Anthony if I have hurt his feelings. I will keep my personal opinions to myself from now on. I hope a couple of the other members (won't mention names-don't want to be insensitive) will do the same.
Last edited by fastpage on September 8th, 2003, 5:36 pm, edited 1 time in total.
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Postby Arron on September 8th, 2003, 4:36 pm

I think you hit the nail on the head fastpage, and maybe some of us took it wrong, myself included.

What you said you in your last post that maybe should have said; "Please forgive me but I have some doubts that Anthony is a neurologist and if that is true, I worry about the effect he will have on some members of the group" is probably how most of us would have said it, and we (and Anthony) mistook your words as an angry accusation.

People don't like being accused of things. I agree that anyone can come on a board like this and wreak havoc, and we get them from time to time and deal with them. I also agree that there are people out there that just do this kind of stuff to get attention. We agree on a lot of things. It was merely the way you presented your doubts about Anthony that didn't seem very nice and which is why some of us came back at you for sounding harsh.

It's how things are said that make all the difference in the world and how people react to other's. You said "tact is not my forte", but when you are dealing with other's and you don't want "attitudes" or flack back from other's, sometimes tact is a must. I don't take kindly to people that use no tact when talking to me in person, and I'ma big enough boy to tell them to their face when I think they need to be a little nicer in their "tone" of voice.

Everybody has the other side in their family. My other side is my older brother, who is an Oakland Chapter Hells Angel, and has been for like 20 years. You wouldn't want to talk to people like that without "tact" or it would probably be the last words you ever said. That is kind of my point here. If you don't want to upset other's, you need to use "tact" and have consideration for other people's feelings, otherwise you should probably expect other's to get upset about it. "Tact isn't your forte", and taking accusations isn't mine... and isn't many other's either, so someone needs to make a small change here... a little tact goes a long way.

I agree wholeheartedly about all of what you said though, so don't get me wrong. I agree that it is VERY damaging when someone comes on here claiming to be a neuro or a doctor or claiming that their doctor said "this and that" when you know it's wrong, especially when it puts all of us in an unjust panic.
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Postby fastpage on September 8th, 2003, 5:17 pm

Actually, I have dealt with a lot of people exactly like your brother and I always found that they respected candor more than pussyfooting around- but that is neither here nor there. I get a little short sometimes. Like you I suspect, I don't really much care what other people think, although I will respond when things "get my goat". I'm trying to turn over a new leaf. The comment about Anthony was meant more as a warning to others than as an insult to him. Anyway, you are correct-this thread has gone off on a tangent. My fault. Sorry.

PS- I have spent hours and hours trying to figure out what instigated these symptoms. I can think of only three things that occurred near the time they appeared: 1. The Atkins diet, 2. Periodontal surgery a few weeks earlier, and 3. Using Lipitor. I have pretty much discounted 1 and 3 but I was wondering if you have heard anything regarding #2. I have read recently that perhaps some neurological problems may be related to gum disease and surgery. I did take a course of antibiotics after but I will have to check with the pharmacy as I don't recall what it was. I know oral bacteria are suspected in other ailments, including heart problems. Have you ever encountered this theory?
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