I'll try to answer your questions as best as "I" can.
*Can someone really explain "real" vs "perceived".
The main difference is exactly as the words describe. Perceived weakness is a "feeling" of being weak yet no "real" loss of strength. Meaning if you felt like you had no energy and were just draggin-ass but a thug decided to chase you to rob you, you could get-up and go if you HAD to. Fatigue is usually the main root of perceived weakness or that "drained" feeling. "Real" or "clinical" weakness is a measured weakness that is there 24/7. It doesn't come and go and it is measured by someone pushing against your muscles and comparing one side of your body to the other.
*What I mean is that in A.L.S. you have real weakness but at the VERY beginning it must have been hard to tell if you really were weaker. Surely it doesnt just hit you so one day you cant lift a coffee cup.
You're right. You don't just wake-up one day and not be able to hold your toothbrush or coffee cup but keep in mind. With ALS, the twitches are secondary, meaning that if you feel twitches that scare you enough to go to the doctor, you will already have muscle damage and a doctor can tell where the weakness is, so you will already have signs that you are unaware of by the time you feel any twitches.
*So what Im asking is how can one tell if perceived weakness is just the beginning of something more ominous? Is time the only real telltale answer to see if your weakness progresses?
Yes and no. An EMG will be the real deciding factor. Otherwise as the old BFS saying goes.. time is on your side.
*If so how long would it probably take to reach the point of obvious weakness?
There is no one answer to that when it comes to ALS or any disease for that matter. Everyone is different and everyone reacts differently. There are "usual incidents'" that are guidelines to go by but as with everything in life "except death itself", nothing is absolute. There have even been reported cases where people with ALS have "snapped-out of it" somehow. No one knows why but a couple of cases have happened. So again, nothing is absolute. ALS is a pretty fast progressing disease though so if you already had twitching in one spot, that spot would already show signs of weakness and surely an abnormal EMG and that's about all you can go by, other than the fact that ALS twitches are TOTALLY different than BFS once you know the "signs" and that's why just about any good neuro can tell you whether your twitches are benign or not the minute you walk through the door. There is a LOT of misinformation floating around out there in outdated and mis writted medical books, on the internet and so on, so as soon as someone looks-up "twitches" and see's that it leads to ALS... they are not only misinformed in a BIG way, they are also put into a state of panic that is REALLY hard to get out of, even after numerous doctor visits and such and that is what makes all of this so hard. Trust me, there's a BIG difference between real weakness and perceived weakness. If you have clinical weakness, it won't be long before you know about it, that's for sure. Exactly how long no one can tell you, but it wont be "that" long...
