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Old 02-09-2008, 08:06 PM   #1
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Constant fasciculations ALS??

I am a 39 year old female. I have had a tendency toward fasciculations since childhood. In my early 20s I saw a neurologist who looked me over and pronounced them benign. I have always had them off and on but in the last month they have gone crazy. There isn't one moment all day where I cannot feel one in my leg, then stomach, then arm, back, neck, tongue, toe, hand, face--I had one really big one in my right shoulder for about 3 days that you could see through my clothes but thankfully it went away. It is terrible.

I have no weakness at all. In fact, I started a weightlifting program in January and had no problem at all (I have since stopped) I also do Yoga and my balance/strength are fine. I am very worried that I have ALS. What does this sound like? Why the constant crazy fasciculations? Oh, and sometimes my feet or legs feel like they're "buzzing." Help!

 
Old 02-12-2008, 06:55 PM   #2
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Re: Constant fasciculations ALS??

All I can tell you is, that I saw a neurologist last year for the exact same thing....constant fasiculations. They have since subsided SOMEWHAT, but they are always there too, just not as bad as they used to be. I had a nerve conduction study done that came back as negative. I asked him if it was possible to have it ruled out only to be diagnosed with it later, he stated no, it was not possible. I think if it was going to be ALS we'd know it by now. He told me it was Benign Fasiculation Syndrome. If you are that worried, go see another neuro. I've noticed mine are worse when I have physically strained myself more, but I still get the daily regardless.

 
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Old 02-12-2008, 09:42 PM   #3
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Re: Constant fasciculations ALS??

I am actually going to the doctor tomorrow for this very thing. I am glad I found your post. I have had the facilations or muscle twitches for a couple of weeks now. It is everday. I get them in my legs, arms, stomach and eye lids. It freaks me out. I have read you can get them if you are tired, (but I am not that tired) or from stress and anxiety. Also from perhaps a low thyroid. Which I do have hypothyrodism. I am going to have my doc check my thyroid level. I wish we could get an answer for this. I do worry about MS and ALS too. But I am really quite strong. I work out and am a Massage Therapist so I don't notice and weakness going on at all. It just freaks me out this twitching thing. Mostly when I am sitting watching TV or laying in bed. I am glad I am not alone. Please let me know what you all find out about yours. Thanks!

Last edited by TEdds83; 02-12-2008 at 09:44 PM.

 
Old 02-13-2008, 07:35 PM   #4
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Re: Constant fasciculations ALS??

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.

 
Old 02-14-2008, 07:54 AM   #5
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Re: Constant fasciculations ALS??

That is so helpful. Thank you. From your description mine definitely sounds like BFS. I have been under a lot of stress lately. I have no muscle weakness at all--in fact I am getting stronger due to my yoga and weight lifting practices. But the twitches are EVERYTWHERE. As I type I feel them in my hand, cheek, lip, back, butt, foot, shoulder--it just goes on and on. Thank you for your helpful information. I will discuss this with my doctor.

 
Old 02-14-2008, 07:01 PM   #6
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Re: Constant fasciculations ALS??

I'm very curious, please let me know what your doc says! Have a great weekend fellow twitcher

 
Old 02-15-2008, 05:22 PM   #7
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Re: Constant fasciculations ALS??

I got a call from the nurse at my doctors office today. I had been tested for low calcium. Sure enough it came back that my calcium is low. I have been told that when your calcium is low you can get muscle twitches. I have had them on and off for about 6 months. But been getting them like crazy everyday for 3 weeks. I started on the calcium tablets yesterday. I hope this will take care of it. Anyone know how long till it gets going into your system real good to maybe get the levels up and the twitching to stop? Thanks

 
Old 04-04-2008, 03:31 PM   #8
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Re: Constant fasciculations ALS??

Thanks for the post. Is this something your neuro told? I been having twitches for about 4 months now. They are all over and you cannot see them. They are quick. Not rolling. My left arm hurts like growing pains sometimes and it just feels weird. No twitches there.

I have slurred speech sometimes too....strange. No twitches on tongue.
I have posted here stating my sx. If you have time please look. I would like opinions.

Thanks

 
Old 05-03-2008, 07:34 PM   #9
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Re: Constant fasciculations ALS??

I still have the muscle twitches. My Calcium level is back to normal but I am being treated with high doses of vitamin D because that was way too low. I am FINALLY seeing a neurolist on Wed. After waiting 2 months to get in. I REALLY hope that I can get an answer to this mysterious problem. I am really sick of it.

 
Old 07-25-2008, 03:08 PM   #10
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Re: Constant fasciculations ALS??

Thanks you made me feel alot better, I always assumed that you would have muscle weakness or difficulty walking, picking things up BEFORE you had twitches SO NOT twitching first, I guess mine the (twitches) are from nerves, anxiety.. I am a very anxious person to begin with. Thanks again!

 
Old 08-28-2008, 11:54 PM   #11
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Re: Constant fasciculations ALS??

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:
Originally Posted by lilbit1973 View Post
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.

 
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