BFS Online Support Group

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Postby Flash19 on November 13th, 2003, 1:25 pm

Well after visiting here, and posting my thoughts in return surprise, surprise I stopped worrying about twitching, and surprise, surprise it went away. Not bad for someone that was driven to suicide by it!

The twitching recently returned. Three things caused this:

1) Drinking alcohol.
2) Drinking coffee.
3) Reading a biography of David Niven.

Please note that alcohol and coffee not only cause me to twitch but also give me palpitations and IBS. So whatever they do seems to affect my body in many ways including increasing the release of twitch enzyme.

The David Niven thing doesn't worry me too much because I've stopped worrying about ALS since I developed hypochondirous onset throat cancer. This was caused by a virus that felt like the flu, and the sore throat has lingered a few weeks, although it is progressively getting better, so the thought of cancer popped into my head. Not enough to banish me to the crapper for an evening, but these days i'm coping a lot better with hypochondria. You people have helped me a lot. Thanks.

Anyhow just FYI. Niven's onset of ALS was lengthy and it took ~4 years to run it's course. The book mentions his symptoms in detail but DOES NOT, REPEAT NOT mention any twitching. His initial symptom was being unable to lift his heel. Ultimately he suffered muscle weakness and weight loss on a grand scale.

BUT NO TWITCHING. And his onset was VERY SLOW. The book also mentioned that several young Italian football players had gone down with ALS and all that they (and Niven) had in common was that they were all in trim shape, very fit, and had been taking anti-inflamitory drugs. So there you go...

So here I am still alive and just as strong and mobile as ever almost 3 years since the ALS worries began, although I remember twitching as far back as late 1991.

YOU ARE ALL GOING TO DIE!!!! AAAARGH. Just not of ALS. Sorry Carole Marie but this includes you.


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Postby Pole on November 14th, 2003, 3:16 am

Nice post Flash!
There is also a Polish famous football (soccer) player who has ALS. His onset was in 1999 - now he is on wheelchair, don't speak, but still alive.
He's quite reach and he has reach friends (he plays in German club team) so he tried all ways to fight with the disease. He even went to China and tried Chinese medicine. Unfortunetelly nothing helped.
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Postby sarahtonin on November 14th, 2003, 5:22 am

OK, remind me not to play football...
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