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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Another thing I forgot to tell you is that my neurologist told me that with ALS, fasciculations are the last thing that usually happens with the disease...that the muscles get weak first and the fasiculations happen FROM the muscles deteriorating after a while. I was told it usually starts like this: It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of “continual twitches are an indicator of a motor neuron disease such as ALS“, which is SO un-true and taken out of context.

And as far as how long it lasts: In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on. BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.



ANd here's the BIG ONE: 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.

Mine, as with BFS, are ALL OVER THE PLACE...this is just info I am passing along from my doctor and my own research. I do hope it makes you feel better. Please keep in me posted.:)
thanks a lot for this. i wish i had had the courage to read this post when i was having some major issues with twitching a week or two ago. i had practically convinced myself i had ALS. the anxiety probably just made my twitching worse. it is gradually subsiding and has become easier to manage.




[QUOTE=lilbit1973;3440845]Another thing I forgot to tell you is that my neurologist told me that with ALS, fasciculations are the last thing that usually happens with the disease...that the muscles get weak first and the fasiculations happen FROM the muscles deteriorating after a while. I was told it usually starts like this: It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of continual twitches are an indicator of a motor neuron disease such as ALS, which is SO un-true and taken out of context.

And as far as how long it lasts: In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on. BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.



ANd here's the BIG ONE: 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.

Mine, as with BFS, are ALL OVER THE PLACE...this is just info I am passing along from my doctor and my own research. I do hope it makes you feel better. Please keep in me posted.:)[/QUOTE]





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