JohnnyRocket
Well-known member
So often over the years I’ve seen discussions on the odds of getting ALS as a means of reassurance. While I understand it’s comforting to see the enormous longshot for someone to get ALS, I also think this can open the door for thinking “maybe I’m the exception”….I doubt that I’m the only one here who has gone down that dark road before. I believe when it comes to battling anxiety, our success lies in focusing on certain things that matter while ignoring other things that don’t. Many factors fall into both of those categories, so I just want to focus on the subject of probability. Specifically, I like to consider the fact that many ALS experts have told us “You have the same chances as the general population”, and what that really means to us. While the engineer in me wants to crunch the actual numbers, I feel it’s more important to reflect on logical conclusions we can take from this general statement. I see it this way…. Imagine a scenario where an ALS specialist sees two patients for potential ALS. I’m one of the patients, and I have twitching somewhat random over my body, various hot spots, feels pins and needles in my feet and other areas, buzzing in various places, popping joints, jerks awake me from sleep, numb feeling hands on some mornings, etc. The second patient, “Joe Blow” complains of a headache and runny nose. Very different symptoms but both of us are terrified of ALS and want to be reassured. After all the necessary tests (clinical exam, EMG, etc.) the neuro tells each of us that our symptoms are benign, and our chances of getting ALS are the same as the general population. These are some truths I take from that:1. Once we get to the point where our symptoms are shown to be benign, then thats the end of the story....we are the same as every non-twitcher out there.2. Our symptoms can never “turn into” ALS down the line. Period.3. With respect to ALS, my symptoms should be equally non-worrisome as Joe Blow’s headache and runny nose. 4. With respect to ALS , I should be no more worried than a random guy on the street who has hardly been sick and never twitched a day of his life.5. Simply put, my symptoms (which have been scaring the crap out of me) have ZERO to do with ALS in any capacity….past, present, or future.6. Anything that seems suspicious in my pool of symptoms, no matter how weird it feels or looks, has ZERO to do with ALS.7. Any time I think one of my symptoms is “the start of ALS”, I am completely irrational and flat out wrong.8. Any thought of me “being an exception” makes no sense once my symptoms are proven to be benign.9. The probability of getting ALS has no more relevance to me than the probability of any other fatal disease or occurrence.Generally speaking, we are a community of people that fear (or have feared) our CURRENT symptoms represent ALS. The message we get from the top ALS experts is we are equally likely to get ALS as non-twitchers . That’s the equivalent of saying that NONE of our symptoms have anything to do with ALS. Probabilities about ALS have no more relevance to us than anyone else. We might as well be focusing on the likelihood of getting cancer, dying in a car wreck or plane crash, and being struck by lightning…..or at least that’s my take on it.
) Frances