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Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 10:41 am
by crotwich
Even though I don't like to do this, I'll do some basic statistics. For simplicity, I'll assume that all involved variables are independent (they are dependant of course, but to reduce the involved dependencies, I'll increase the values of variables).

1. Let's assume that the incidence of ALS is 3/100 000=0,00003 (as I said, I started to exaggerate a little).
2. Assume that the patent's only symptom is twitching and that she/he had a clean clinical exam. I'll use the Eisen's famous 6.7% (this percentage is probably even lower, because most of us don't have frequent cramps on weird places). So we get a number of 0,00000201 (6 zeros).
3. Also assume that you had a clean EMG after several months of twitching. Many neuros will say that EMG is more than 90% reliable with respect to LMN abnormalities, so if I use 10%=(100-90)%, we get 0,000000201 (7 zeros).

If the numbers from this site http://www.lightningsafety.noaa.gov/odds.htm are correct, you can see that the odds of being struck by lightning in a given year is 1/1,190,000=0,000008403 (6 zeros). How many of you are afraid to be struck by lightning in the year 2015?

4. Moreover, if you are younger than 40, you have even more than 90% less chance of developing ALS at your present age... So, as I already said in my previous post, the chances are indeed astronomically low.

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 10:50 am
by RobJ
Mommnylondon,

What did I say that leads you to believe I'm creating fear?

Let's me state again the facts. There are studies that indicate twitching does occur prior to weakness. That's not me, you can google them, or I can send them to your email. I disagree with these studies. Most of these people on this site, have read these same studies. It's as simple as typing it. You also get into the AL$ forum site where it's discussed.

I disagree....You are in denial if you think people on this site are not looking at this information. They are, that's why they come to this site, looking for people to disagree with it. AND I DO! I DISAGREE!

Others, haven't read your back posts, want to say the data doesn't exist, when it does. Who's creating fear? You created fear by saying I saying something that I am not!

LET ME BE CLEAR, I DON"T BELIEVE TWITCHING PRECEDES WEAKNESS!

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 10:56 am
by johnnythejet
Cue circus music

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 10:58 am
by Ghayes420
This is entertaining. And very depressing because this thread is definitely going to set off fears in the poor newbie who clicks on this thread. Glad this thread wasn't around 3 years ago. :shock:

I have a simple question for rutra80 because I am trying to be open minded and understand your thought process. Please bear with me.

When you wrote "3-5 years. Do your best to find some really good physician, do EMG every year or a half, plus other tests, and if they're fine, you're most probably fine."

You used the term IMO. So did you come to this opinion and conclusion because:

A.) you read the Walton report by Dr. Singh. ironically, this is the only published medical report that gives this 'exact' time frame of 3-5 years before a benign dx is secured in his opinion.

B.) your personal opinion as a non-medical professional based on Internet forums and various other studies you compiled.

C.) you were told this timeframe from an ALS/MND specialist that you saw personally and he told you this piece of information during your visit with him/her.

Was it just A or a combo of both A and B?

Thank you for taking the time to clarify how you came to this conclusion.

Merry Christmas everyone!

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 11:14 am
by bobajojo
@rutra80, I manipulated your words? I'm sorry, I thought I read "ONLY TIME WILL SHOW what is on with you. 3-5 years." Did I not?

@Robj, I don't know what to make of anything you've been posting. Its like you're trying to reassure people while scaring them at the same time.

The reason we read only parts of your posts are because they are meaningless and a complete waste of time, and exactly the opposite of what I've been told by the Mayo Clinic. I'm not much of a fiction reader, never have been.

-Matt

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 11:18 am
by RobJ
J4son,

I understand, I'm confusing, My boss tells me all the time that I forget to connect the dots in my emails and then people assume.

I'm not saying people shouldn't listen to their doctors. They should. I'm saying it's OK to question them. J4son, story after story after story I could tell. I'm sure you have your own. My current GP who is now my Son's GP, is the type of doctor where the leg has to fall off to be seen by someone, which frightened me recently when he saw my twitching and starred, then I made my leg cramp on call, he starred, then said "I'm OK with this because you've been twitching for sometime" but I think you should see a neuromuscular specialist again? Why did he say this? So I challenged him, after arguing, we decided on seeing a neurologist in the area. I did this not for myself, I settled for him. This new neurologist, I saw, was physically uncomfortable with my twitching and cramping and actually said to me I've never seen this?

I'm saying that people on this sight are doing more harm than good when they discredit other studies. It's a form of denial, they are doing it for their own benefit, not someone else's. Some are so far in denial that they make up stuff or as you can see they say I'm saying things I'm not.

Then there are other replies where they are making fun? You can see them.

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 11:39 am
by mommylondon

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 12:06 pm
by leaflea
Only thing for me to add is that J4son, I have been watching you and your posts for a while now...and my vote is for you with the most even handed mind for reason. Your calm and rational posts have helped me. Thank you.

Re: Paper about not-so-benign fasciculations

PostPosted: December 19th, 2014, 12:18 pm
by garym
I've read enough....the world isn't round guys and if you think it is, prove it.