Why not ask at ALS site?

General Topics

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Postby Arron on June 22nd, 2004, 2:50 am

I have to totally disagree with Valentina. Not all people have such an easy outlook on life and on their own health. People every day get diagnosed with terminal illnesses, such as ALS, cancer and so on, and they accept it and move-on, while other people simply freak-out and some get so freaked out and can't handle it, they end their lives. We certainly don't need any of that here. Not everyone has the same, happy go lucky way of thinking that if you are afraid you have something such as ALS, that you should go to an ALS site. That is very bad advice for people dealing with serious anxiety issues brought-on by the fear of having ALS.

It has been common knowledge around here that ALS sites are taboo and to stay away from them unless you want your anxiety levels to go overboard, and that is still the general feeling. There is no "rationality" when you are "off the deep-end" with anxiety, and for someone to come on here and ridicule other's for not going to ALS sites for information is utterly rediculous. Why throw fuel onto an already out of control fire? The whole problem with this stuff and why people are here is simply because they are scared to death and are hoping to find answers and SUPPORT from other's going through the same "shared" experiences, rather than hearing the grim outlooks and misleading diagnosis' / time frames, and so on that some ALS patients post on their web sites.

By leaving out one little detail on an ALS site, such as forgetting to say that although you had twitches, your EMG was also "dirty"... THAT in itself can send an entire web site of people who are looking for hope and support, off the deep-end, and we all remember the bogus "Mayo Study" frenzy where the misleading info stated that some patients "presented" with twitches only, but they mentioned it later in the report that ALL of the patients had either dirty EMG's or no EMG's at all, so how can they say some "presented with twitches" when they weren't even tested on an EMG yet to be sure?

ANY good neuro will tell you that it is HIGHLY unlikely to HAVE ALS and a clean EMG. And what they mean by HIGHLY unlikely, is the same liklihood as a mateor coming down and hitting you on the head kind of unlikliness. Although that has happened twice on record now where people have been struck by meteors, but come-on, the odds of that happening are SO tremendous it is almost not able to be calculated, and besides, YOU can go get a second opinion by another doctor, and that takes those "highly unlikly" odds and stacks them up two fold!

Not all of the posted information on the ALS sites is actual "fact". If we believed most of the actual patients who do have ALS, in most cases, you would think that the way they got their first symptoms is the exact same way people with BFS got their first symptoms, and in reality, nothing could be farther from the truth when you actually look at the facts. Besides, ALS twitches and BFS twitches are totally different, yet if you see how they are described on the ALS sites, you wouldn't know that. But because of human error, and the time frame of the minds of some of the people with ALS, what they post (although unintentionally) and what is reality is almost always a blurred line that "can" cross over into BFS'er's zones and in turn, send them off the deep-end.

Besides, like someone already said, people with ALS have better things to do than to deal with someone that may or may not have anything bad at all. Their days are numbered (sadly), and they don't need a bunch of freaked-out, anxiety ridden people hounding them for information. Those are sites designed for support between ALs patients and believe it or not, "companionship" with other ALS sufferer's. Yes, "companionship" IS a big deal to some people, just as many of you were relieved that you are not alone with having BFS. It does help in knowing other's are going through the same thing as you, and it is even more helpful when you hear positive experiences and good things from people that are quite experienced with BFS. If you value your sanity and don;t want to start a new bout of anxiety, I would say to listen to experience here, and stay away from the ALS sites. If Valentina has no problem with visiting those sites, then fine, it's a free world, more power to her, but her advice is off kilter with the literally thousands of poster's on this web site that say otherwise, so you believe who you want to believe....

Also, if I see any posts or quotes or anything like that from any of the ALS sites on this site, that will disrupt the very root of why we are all here, I will delete them instantly, and if who ever doews it again continues, I will block their ISP from being able to access this web site again and terminate their membership permanently. Just fair warning in advance in case anyone has any bright ideas..... I will NOT allow a panic frenzy on this site again like we have had in tha past with similar incidences.
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Postby SLL on June 22nd, 2004, 10:29 am

here here Aaron!!!!

I am off to the neuro again today and I will share words of positive wisdom for all when i return!
Selfless giver of time
Selfless giver of time
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