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Author Topic: For those with ALS fears...  (Read 472 times)

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Offline braves0042

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For those with ALS fears...
« on: August 28, 2014, 06:26:33 AM »
I found this post directly from an ALS forum, I think it was a post to help relieve fears of people with anxiety and BFS. Now since I am fairly new here and might not know all of the rules, please do not hesitate to take this post down if I am not allowed to take from other forums and copy, but I do think this will relieve the fears of many with ALS fears, also if someone already posted this I do apologize for posting it again, but I am taking a shot in the dark here to try and help some people with this fear, here is the post below...




"I was just surfing the internet and came across a great article on the differences between ALS and BFS(Benign Fasticulation Syndrome)
What is the difference between a BFS twitch and an ALS twitch?

There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it's dying process, NOT before. So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won't have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

The EMG is always positive in ALS" That's about as plainly as you can put it! ALS twitches are CAUSED by dying nerve endings AND dying muscle tissue. It is a SECONDARY action to the disease! Not a first symptom that causes muscles to die later-on. If you have twitches and it was caused by ALS, you would ALREADY have the disease present in your system which would show-up on an EMG. Twitches without weakness and with a clean EMG are NOT ALS. It can't get any clearer than that!

The bottom line here is simple, BFS is common, ALS is not. BFS twitches and odd symptoms are in no way related to ALS twitches what so ever, and unless you have several dirty or abnormal EMG's and a specific diagnosis (under strict guidelines), and have no "true weakness or "true" atrophy, then YOU DO NOT HAVE ALS!



 Twitching in ALS is a direct result of the disease running it's course. It is NOT a pre-curser symptom! In other words, if you have twitches that are associated with ALS, it means the disease is ALREADY running its course because muscles diseased with ALS don't begin to twitch UNTIL micro fibres begin to die and disconnect. With that, ANY EMG at ANY TIME would CLEARLY show the disease, no matter how far along, or how early you THINK you are. There is no "incubation time" or "window frame" once ALS twitches have started. If it's ALS and you are twitching, the disease is ALREADY well into running it's course, and of course, will ALWAYS show up on an EMG, no matter where it is performed on your body.

With that, just because you twitch in one small place on your body doesn't mean ALS isn't running all through it. Nerve pathways run the entire length of your body. You can get tested just about anywhere and it will show-up, just like getting a blood test will show why you have a cold sore, even though a cold sore almost always appears and re-appears in the same exact location, over and over again, it is STILL running through your whole body, just like ALS is.

Do NOT confuse "perceived" weakness with clinical weakness, nor confuse fatigued feelings with true muscle weakness. True physical muscle weakness and clinical weakness do NOT come and go. It is permanent and on-going to the point where you completely lose control and can no longer use that limb, (forever), and then it MIGRATES from there to other parts of the body. ALS is not random, and it certainly doesn't come and go like BFS does.


What is the difference between "perceived" weakness and "clinical" weakness?

A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it's in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.

Fatigue and "perceived" weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual "weak" feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn't really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back. A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor's appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren't even aware of. BFS "weakness" on the other hand, is pretty much only fatigue and although you may "feel" weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn't move at all.

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain."





And there it is, like I said if this was posted before, or if I am not allowed to post this the moderator can just take it down, but I hope it eased some peoples fears about the disease. I also don't want to strike anxiety in anyone with this post, it's just that a lot of ALS fears are popping up lately and I thought maybe this would help a bit.

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Offline atleswoolf

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Re: For those with ALS fears...
« Reply #1 on: August 28, 2014, 08:45:30 AM »
What an excellent, helpful post.  I hope it's not taken down.  I'm struggling with ALS fears at the moment, and this is reassuring.
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I meant to write about death, only life came breaking in as usual.  -- Virginia Woolf, Diary, 17 February 1922.

Offline braves0042

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Re: For those with ALS fears...
« Reply #2 on: August 28, 2014, 02:55:50 PM »
Glad it could help, hopefully more people read this and it helps them as well :)
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Offline sixpack

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Re: For those with ALS fears...
« Reply #3 on: August 28, 2014, 03:25:54 PM »
I hope this thread knocks some sense into peeps around here.    ;D  with the amount of ALS threads lately (which there is an uptick from the challenge I am sure, but even without that,  ALS is, traditionally a top disease fear) you would think there was at least a 50% of the population getting it.

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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline bearsfb66

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Re: For those with ALS fears...
« Reply #4 on: August 28, 2014, 04:20:12 PM »
Best post I've seen in a long time. I think if anyone is having an ALS fear right now needs to print this off and look at it when your fears kicks in. This has my vote as a sticky note post on the top section. With all the challenges all the health anxiety folks are now focusing on this scary disease...I AM and posts like this helps with my fears.
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Offline braves0042

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Re: For those with ALS fears...
« Reply #5 on: August 28, 2014, 06:50:03 PM »
This probably can be pinned if someone decided to do it, but yea I just want everyone's fears of this disease to alleviate at least a little bit but cause with all these ice bucket challenges and these new diagnoses coming out of the woodwork it is hard for some to not get anxiety about ALS, understandable I guess,  but I think this article explains it best to alleviate the fears of ALS for those with anxiety.
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Offline braves0042

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Re: For those with ALS fears...
« Reply #6 on: August 29, 2014, 07:23:05 AM »
Bump
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Offline Tupelo

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Re: For those with ALS fears...
« Reply #7 on: October 24, 2014, 03:10:15 PM »
Awesome
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Tags: ALS anxiety 
 

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