by RobJ on December 19th, 2014, 7:39 am
Yes well said. Finally someone understands my point.
There are a group of individuals on this sight that remind me of North Korea. We only want you to listen to what we say. Then what's alarming, which I suspected but just drove out of them, they've got nothing to show for what they say. They've got the same studies that we can google. That's another thing, stay off the sights, don't google, but they can go to the sights and they can google. It's a power trip. He who controls the information controls all.
Look at their past posts, their experience is BFS itself, some of them, never officially diagnosed, and some of them stopped seeing their neurologist because they didn't want to know? Listen to your neurologist? And they make these statements like they are fact, you challenge it a bit and you are a newbie, a flamer (which I'm alarmed Garym didn't connect the dots on that, I mention gynecomastia and then someone calls me a flamer and that post is allowed to stay), not in touch with reality. Look at their replies! Then a moderator mentions he's watching me, are you watching the people that have reverted to name calling?
These same people that tell people not to worry, worry just like you. Why? because the literature is sparse. The time of onset of ALS is really not known. Studies have attempted but it's too sparse over too much time. But I do believe weakness comes first before twitching, I do. People tend, especially men, to ignore the signs.
The landlord example is what I've seen, someone I talked with. I'm betting if you looked at his medical record it would say diagnosis to death in 3 months. But I'm betting he had ALS not only 5 years before, but longer, I'm not certain, but I'd bet he'd contribute his weakness to old age.
Go to the AL$ sight, plenty of them have mentioned twitching well before weakness, but again, I'll say it again so I'm clear, I believe they had weakness first. I ask over and over and over, are you sure no weakness prior?
It's similar to hearing about someone who unexpectedly died of a heart attack that had no signs. They sure did have signs, they just didn't tell anyone. I know myself, if I had weakness, I'm not sure I'd tell my neurologist and go through all that crap again.