Real weakness vs. perceived weakness

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Real weakness vs. perceived weakness

Postby Guest on September 19th, 2002, 11:33 am

Can someone really explain "real" vs "perceived". I know it sounds obvious but there must be some point where the def'ns are blurred. 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. 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? If so how long would it probably take to reach the point of obvious weakness?
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Postby Arron on September 19th, 2002, 11:56 am

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...
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Postby GUEST on September 19th, 2002, 12:31 pm

tHANKS AARON. THAT MAKES SENSE. DOESNT MAKE WAITING FOR A NEURO OR EMG ANY EASIER THOUGH. JUST ONE QUESTION... YOU SAID YOU WOULD HAVE SYMPTOMS YOU ARE " UNAWARE" OF BY THE TIME YOU VISIT YOUR DOC. DID YOU MEAN "AWARE" OR CAN YOU HAVE WEAKNESS ONLY YOUR DOC COULD DETECT AFTER YOU START TO TWITCH FOR A MONTH OR SO?
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Postby Arron on September 19th, 2002, 4:33 pm

no, I meant un-aware, just as I wrote it. If you went to the doctor because you were experiencing twitches and twitches are SECONDARY, you will show "some" kind of signs of weakness that YOU might not be aware of yet the doctor is, therefore, you might not feel the weaknes in the early stages of ALS but the doctor will sure find it and it ain't an instant "perceived" weakness that comes-on suddenly like fatigue, it is gradual such as noticing that you can't close your fist all the way or you have trouble holding your coffee cup, or you can't wiggle your toes, etc. You might not be aware of anything at first but if you are aware of the twitches and they are from ALS, there WILL be other signs that a doctor WILL see after he evaluates you that you might not notice at first. So what I'm getting at is the weakness IS there, even at early stages, but YOU might not notice it yet. It doesn't just hit you like Fatigue does. It doesn't come and go like fatigue does and it doesn't hit random spots one minute then hit other random spots the next like fatigue does. It is real, permanent weakness as well as loss of muscle control.
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Postby Guest on September 20th, 2002, 11:13 am

I just wanted to throw my 2 cents in on this. First, most of what Arron is saying is correct. At first, the weakness may not be noticable, but it is doubtful that you would have any noticable symptoms so early. I'm assuming you're having twitching. Twitching normally doesn't appear until after the muscle dies.

I, too, went through the perceived vs real weakness dilema. I would spread my fingers and then test how hard it was to force them together. (your neuro will do this test) It was easier for me to close my own fingers than it was to close my girlfriends fingers. Naturally, I freaked out. I also had problems with one knee feeling weak. It was always the same knee and the feeling never went away. I didn't feel fatigued, my knee just felt 'rubbery.' Also, it was harder to do a lunge on that leg. It was definitely weaker. Of course, I assumed I had ALS. I was constantly testing my strength at this point. My muscles also felt achy during this time.

Long story short, I'm fine. It was all in my head. There is something known as hysterical weakness. If you truely think you are getting weaker, your mind will perpetuate that mental construct. The weakness would stop after an emergency appt with my neuro. Then when I started obsessing again, I would find a new weak spot. Back to the neuro. It was a terrible cycle.

One bit of advice, don't try to self-diagnose by way of information you find on the 'net. It caused me endless worry. You'll find one thing that reassures you, and another that makes you think you're dying.

If you prefer to look, I recommend medhelp.org. It is a website run by the Cleveland Clinic, which is one of only 8 ALS centers in the US. You can post questions and receive answers from a Neurologist. Much better than anonymous postings on the net. (hehe, me) Just remember that they aren't going to say yes you do or no you don't have ALS. They will just give you solid information and an opinion on what you should do. (if you do post a question, do it in the morning...they have a daily question limit. I think the counter resets around 8 or 9 am)

Good luck and try to remember that ALS is VERY RARE. Like EVERYONE here, I'm sure you'll be fine. Btw, how long have you been having problems?
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Postby guest on September 20th, 2002, 2:23 pm

I enjoyed your post "Guest". It certainly lowered my anxiety level at least one notch. You sound like me. I do so many lunges etc that half my problem may just be overexertion. I hope so. I have been twitching for 2 months and felt weak for about 1 month. Its good to hear from people who can relate to how this throws your whole life into a turmoil. thanks
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FEARS

Postby CONCRETE on September 20th, 2002, 6:20 pm

I HAVE BEEN THE KING OF FEAR ON THIS SITE .
I HAVE HAD CONSTANT TWITCHES IN MY LOWER LEGS FOR 6 MONTHS NOW.
DID THE EMG AND 3 NEURO EXAMS ALL FINE.
THE GUEST IS CORRECT, THE MEDHELP.ORG SITE IS GOOD.
LET ME GIVE YOU A FEW FROM MY RESEARCH.

1-FASCICULATIONS WITHOUT WEAKNESS IS ALWAYS NOT ALS.
2-FASCICULATIONS REPRESENT THE END OF THE DEASISE PROCESS AND THEREFORE ALWAYS COME AFTER WEAKNESS.
3-CALF MUSCLES ARE THE BIGGEST AREA FOR TWITCHERS.
4-WITHOUT MUSCLE WEAKNESS AND A NORMAL EMG NEEDLE STUDY YOU DO NOT HAVE ALS.
5-YOU WOULD HAVE TO HAVE HAD ONGOING DISEASE OF SOME TIME 5-10 MONTHS BEFORE YOU WOULD SEE FASCICULATIONS.
6-THE DR. HAS NEVER SEEN ANYONE WITH FASCICULATIONS AND A NORMAL EMG EXAM DEVELOP ALS.

ALL OF THIS COMES FROM THE CLEAVLAND CLINIC.
I HOPE IT HELPS YOU

CONCRETE
CONCRETE
 

Postby Guest on September 20th, 2002, 6:56 pm

This is the replying guest. Err...I posted about medhelp.org. I just wanted to say that Concrete's post sums it up perfectly. It's funny, I recognize all of those quotes from medhelp. I posted there several times under the name twitcher. Go check out my posts and you should get a good idea of how crazy the ALS scare made me. Just always try to remember that most of the people that post here have gone through what you're going through. Similar symptoms - similar anxiety. To the best of my knowledge, not a single one has been dx as having ALS. Also, NEVER underestimate the mind's ability to manufacture symptoms!!! I hardly ever twitch anymore and all of the weak feelings are gone - 90% of it was in my head.
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