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AboutBFS.com • View topic - Timeframe ?

Timeframe ?

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Re: Timeframe ?

Postby fox2run on April 9th, 2009, 5:20 pm

Calves are the most common place for benign twisting.
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Re: Timeframe ?

Postby Chris_uk on April 10th, 2009, 6:49 am

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Re: Timeframe ?

Postby Angst1986 on April 10th, 2009, 5:04 pm

"Fear is only in our mind,
but it's taking over all the time."

- Evanescense, Sweet Sacrifice
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Re: Timeframe ?

Postby Chris_uk on April 11th, 2009, 3:13 am

i thought he meant that 13% of A*S patients start with localized twitching ??
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Re: Timeframe ?

Postby fox2run on April 11th, 2009, 10:17 am

Its still only a theoretical measure we are talking about. Remember that the people here are the most als-checked population-group on the net... As minimum they have been to GP. After that neuro and some even after that, scannings. And the most hardcore anxieties have been thrue the whole thing more than once.

And in all the panic that you have, you still forget that als is not dificult to rule out. It CAN be difficult to find, but thats becourse some are complaining about weird things that are going on, that could be all kind of things - in the beginning...

But IF the 13% is right, then you have only 1:50.000.000 risk or something like that. But of course - someone has to be no. 2 or 3 on this planet... But its not going to be you, sorry.
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Re: Timeframe ?

Postby Blizna on April 11th, 2009, 11:05 am

Exactly like Fox said..many PALS said that it had taken years to get diagnosis, but it was due to confirmation! If other causes are ruled out but patients doesnt meet all criterias for ALS diagnosis, they need to wait. They have weakness, atrophy, twitching..and it doesnt mean ALS, when present in one region, it could be pinched nerve or monomelic nerve disease..thats why it takes so long. So do not worry about that.
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Re: Timeframe ?

Postby fox2run on April 12th, 2009, 4:25 am

What is PALS? (Though im not sure I want to know).
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Re: Timeframe ?

Postby Angst1986 on April 12th, 2009, 11:58 am

"Fear is only in our mind,
but it's taking over all the time."

- Evanescense, Sweet Sacrifice
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Re: Timeframe ?

Postby Bomp on April 14th, 2009, 5:32 am

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Re: Timeframe ?

Postby fox2run on April 14th, 2009, 6:40 am

I didnt mention lifetime at all, but used the likelyhood given by "bart1" in the "back from neuro" - article. If what you say are right, my quote should be stated "every year" in the end. But still: its a very low number.

And keep in mind: my number is for:

1) people under 40
2) gets bodywide facics as first sign
3) no other symptoms after one year.
4) and still is dx-ed als

And thats NOT 1 out of 1000 but much, much less.
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Re: Timeframe ?

Postby Bomp on April 14th, 2009, 7:44 am

Yea, I guess the bottom line is the risk is minimal. I just felt I had to comment because I see that 1 in 100.000 number on here from and I always wonder where that comes from ...
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Re: Timeframe ?

Postby fox2run on April 15th, 2009, 4:12 am

I wonder how many that have our symptoms without it being sinsister? Less than 1 out of 1000, or more? Is it more rare than als? Hope not.
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Re: Timeframe ?

Postby Bomp on April 15th, 2009, 9:57 am

Oh, BFSers are numerous. Far more numerous than PALS. I haven't seen any reliable numbers because there are no records and very few studies in the matter. Aside from the people who twitch and worry about it (us?) there are the people who are aware that they twitch and don't really care about it and also the people who twitch but don't know that they do.

My girlfriend twitch. I can sometimes feel violent thumps in her thigh or her arm. But she doesn't know it, and she's a worryer so I don't tell her.

My boss stuck out her hand the other day to see if she was shaky. Turns out she had a slight tremor and a very freaky twitch in her middle finger. It kept going back and forth and I immediately thought "Oh my god! Parkinson's". I kept my mouth shut and she just shrugged it off.

My dad has jumpy legs. He has to weigh them down with heavy blankets to prevent them from kicking away when he's in bed.

The point is most people have funny things going on in their body, but the vast majority are unaware of it or don't really care. If you ask around I'm sure you will come up with a whole bunch of twitchers and shakers and whatnot. Our problem is that we have our bodies under constant surveillance, picking up on every little ache or twitch or feeling of fatigue.

So how many people have problems, have had problems or will in their lifetime ever have problems with fasciculations? I don't know. But I would be very surprised if the number was less than 1 in 10.
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Re: Timeframe ?

Postby fox2run on April 15th, 2009, 11:58 am

1 in 10. (or 10% of 1000) That means that 1% of all people with fascics will have something sinister... Hmm. But on this site there have been like thousands and no one has yet reported REALLY bad news... And the study at mayo clinic showed nothing critical except from the "selfinflicted gunshot". Theres something wrong here...
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Re: Timeframe ?

Postby Bomp on April 15th, 2009, 4:09 pm

No, man. I just got back from a few pints with a friend and I am a little drunk but I think there are problems with that assumption. First of all, 1 in 10 is MY estimate and has nothing at all to do with reality. Then you automatically assume that all ALS patients suffer from fasciculations, which may be true in an pure EMG sense, but is far from true if you actually ask an ALS patient. Most of them don't notice the twitches at all. Also you have to look at the demographic. I don't know the age of all people on this forum but I get the feeling that most of us are somewhere between 20 and 40 which puts me somewhere in the middle at 33. Now, I tried once to estimate the chance of getting ALS at 33, using all the statistics I had gathered as well as a bell curve I had constructed myself, and came up with a number of about 1 in 50.000. This is a highly unscientific figure and could aswell have been grasped out of thin air, but it was as close as I could get. Just assume for a moment that that number has anything to do with reality. Then it would probably apply to this community as a whole. And by your reasoning we are down to 0.05 percent of twitchers suffering from ALS. Given the 13% applied before (people with fascis as their first symptom) you're down to 0.006 percent which is a really small number.

But this little excercise is just to prove you wrong and whatever you do don't quote it anywhere. Also I'm drunk.
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Re: Timeframe ?

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