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Postby SLL on June 16th, 2004, 12:47 pm

Firstly, I apologize....I did NOT mean to scare anyone...I am in the same boat as you guys - twiitching and I want to put it behind me, and each time I try, I do something dumb like wander over to BrainTalk and click on something there. I am constantly in fear, think about ALS the minute I get up in the morning and when I go to bed at night. I have a 3 year old and a 1 year old and am terrified, no matter what my physicians tells me....I have convinced myself of something horrible and I,too, come here to feel better.

I did not put up links to these posts I was referring to TDBM did, and that was never my intention and I am so sorry!

Why did I post what I posted?????? - because I wanted feedback from everyone as to their thoughts on these rare instances and unusual circumstances. I wanted some clarification. A LOT of the people on this site have been posting here and other places for a long time. They have gotten to personally know the other posters - I was thinking maybe they had some more facts or personal insights as to why these unusual situations existed. Maybe even they could let me know "oh, I talked with her, turned out she did not have ALS." Or "oh in her case she never had normal neuor exams, etc...". THAT was what i thought would come out of it and help me feel better. I thought it would help others, too.

So I apologize...it got taken down a path that I never intended.
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Postby garym on June 16th, 2004, 1:01 pm

I for one didn't think your question was out of line. You had a legitimate fear and asked a legitimate question. I think the answers you received show how the internet can be a dangerous and decieving place. People can say whatever they want, and don't have to provide any evidence or site any sources.

So don't worry about posting the question. It was the unsubstantiated answers that were the problem. We can all say that we knew somebody that knew somebody that had some condition that went against all medical wisdom, but that doesn't make it fact.

Don't apologize for asking your question,

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No apology needed

Postby Bradford on June 16th, 2004, 1:06 pm

Hey SLL,

Its not your fault and frankly TDBM has an inclination to do this sort of thing because he's done it in the past. Because your a new member, you missed the first go around on a completely different subject.

Not discounting TBDM's frustration and what he seems to be going through, there are some anecdotal lessons in his own personal experience about seeing four neuros who ruled out ALS in brain talk and then in a recent reply to me, he states the neurologist really didn't rule it out but merely reserved diagnosis until true impairment is observed. Thus indicating that he's symptoms may not be as obvious to others as they are to himself. Its highly unlikely that four neurologists would rule out ALS if it was even suspected in just an office visist without performing many of the examainations at their disposal.

Don't worry about it. The hornets nest is understood to be stirred up by TDBM not you.
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Postby jcavan4125 on June 16th, 2004, 3:49 pm


To chime in with Gary and Bradford, I agree that your question was legitimate and not the problem. The problem comes in when people (good meaning or otherwise) make everyone's anxiety level worse by answering questions in an inappropriate fashion. People come to this board in the hope of getting answers (real answers) to their questions. When others respond with anecdotal he said/ she said information it doesn't help anyone and only makes the person asking the question even more anxious. Unfortunately, you will have to learn for yourself to take what feedback you get and filter out what is fact from what is heresay. This is afterall the internet. Goodluck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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