BFS or ALS? A must read if you twitch!

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sadiemae

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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!
 
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sadiemae

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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.
 
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sadiemae

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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
 

brooksea

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That was a great, easy to understand, article. That pretty much sums it up in simple terms. I wonder who wrote it.
 

sadiemae

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I took bits and pieces from a forum, called About BFS, so I kinda wrote it!

http://nextination.com/aboutbfs/forums/


Stress and anxiety feed BFS. Chemicals get released in your body that amplify the feelings, weakness and twitching. It is only normal. You said you do construction. Be up on a roof doing some construction and take a near fall.... the realization of knowing you could have just fallen and broken your neck releases natural chemicals that make your heartrace, your knees weak, make you tremble and cause you to be scared. It is a natural process that fear causes. That same process of fear (thinking you have ALS) feeds BFS like gas to a fire. It doesn't seem normal or likely to you because you haven't done anything physical to make you feel like that. Now add self strength testing all day and it compounds the stress and fatigue and makes you feel weaker and more tired, plus it causes some cramping from time to time. All of this combined puts you exactly in the situation and mind set you are in right now.

The most dehabilitating thing with BFS is the fear of ALS. It causes depression, anxiety, loss of work, loss of family participation, loss of happiness and so on. No twitch on the planet has ever caused any of that. It is all because of fear itself, fear YOU cause on your own. Overcome that fear by educating yourself on BFS as much as possible and you'll lose that fear and WILL be cured. Cured to the point that BFS is no more bothersome than anything else that happens in our daily lives.

There is no wishy-washy ness about ALS. It sets in, takes hold and starts running its course, leaving nothing but unusable fingers, limbs & muscles behind in its wake. It is NEVER random. It NEVER has random pops, jolts, weakness or anything of the sort. It is PERMANENT. Once you feel weak in one spot, it won't feel better in 2, 5 or 8 days later like BFS symptoms do.
 
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LizT

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I think this should be a sticky!
 

brooksea

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Glad they are up to snuff on THAT forum about the differences! I vote for sticky, too!
 

sadiemae

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I think that instead of trying to explain anything to the posters in the DIHALS forum, we should just tell them to go get answers from the About BFS site, and come back if they can not find answers there.
 

Robynnblue

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I run the chat room for BFSers..and I absolutely think this post should be a sticky...It has everything in it that I preach daily...

Great post Sadiemae..Thank you for taking the time :)

Hugs

Robynn LeAnne :)

Also..if anyone would like the link for the chat room for BFSers...please feel free to leave me a message and I would be happy to share the link...We now have over 200 members and there is always someone knowledgeable there to talk to (I've made sure of it :) ) And maybe that would take some of the load off of the DIHALS section.
 

cervus

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Great post, Lori. Good work!
 

sadiemae

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Bumping this up for the new twitchers!
 

notgivnup

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Awesome post Lori, Thank You so much, this should always stay at the top of DIHALS!
 

HelenL

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Great information Lori!

And nice to meet you Robynnblue.
 

Zaphoon

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Thank You!

I wonder how many will read and believe...
 

sadiemae

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I have been copy and pasting parts of it for the twitchers. I actually think it made sense to a 20 yr old who posted today. We shall see.
 
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