I never said I thought I had ALS: there are a lot of neuropathic disorders that affect axons and there are a lot of neuropathic disorders that cause fasciculations. If searching every avenue, and posing questions in order to turn up something that will tell me what this is, is so horrible, why do any of us go to seak help? When we cut ourselves deep, we should just sit still and bleed out, it's our fate, right.
BFS or ALS? A must read if you twitch!
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Barbie
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Patty, My husband did have body wide twitching, but he also had other symptoms by the time the twitching started. In fact, I have a hard time describing what I would call body wide--it was intense and unbelievable for a few weeks. I think that it had a lot to do with the stress of 1) getting sick 2) hiding the sickness 3) realizing that it was something very serious 4) the speed of everything that was happening.
happy to say the twitching subsided, sadly the rest of the symptoms didn't...
happy to say the twitching subsided, sadly the rest of the symptoms didn't...
helloall
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Hello, my name is Joe and I'm a 29 year old male. I absolutely loved reading this thread as I've recently been worried about ALS. If I may, I like to post some of my symptoms in hope for feedback. For more than year I've had symptoms that match those of essential tremor (my PC Dr. Gave me this diagnosis) I had/have accepted this whole heartedly and was rather relieved to hear it. Those symptoms include: tremors in my hands, arms, neck, mouth area, core, buttox, legs and feet. I know that this pretty much covers the entire body. The tremor is only an action tremor and goes away when those areas are at rest. I have excersize intolerance (fatigue) but have managed to get around this and do it anyway. I do feel a good deal of strength while exercising it's just that I tire quickly. After my workout my tremors are at their peak. They also come with nervousness and anxiety. In addition to this my cheeks, jaw and tongue often feel sore (much like TMJ). What concerns me now is that for the past 15 days I've been twitching all over my body all day. It's mostly random but lingers at times in one place. Could the tremors be muscle weakness which is now followed by the twitching? I should also mention that I'm unable to flex my right trapizeus muscle which is how I've always remembered it. I noticed this six years ago, but can still shrug weights (dumbells). The last item to list would be the periodic lightheadedness I feel which happens once a day. Sorry to be the worry wart and thank all those who read this post. This forum seemed to be filled with good people who simply want to serve others. Thank you
It has all been said by others before, but here is my internet science. At one point in my journey I was told I had something called BCFS, and being as nosey as I am I investigated.
Benign Cramp Fasciculation Syndrome (aka Peripheral Hyperexcitability syndrome) is something that happens to relatively young healthy adults who enjoy a lot of physical activity and sports. In some people, a tremor will develope first followed by twitching later on. The type of fasciculations involved in BCFS, BFS ... are not caused by dying nerves trying to reconnect, instead it is more of a static discharge. Pent up energy in the muscle fibers. So, an EMG/NCS will be normal. Another thing I read said that if you move the muscle while it is twitching, it will probably stop. Also, I did read one article that questioned a correlation with ADHD, and of course, if you worry excessively, it is suppose to be a good fit.
Stuff happens to us over the years that cause us to worry. That is normal. Your PCP is your best bet to explore possibilities.
Benign Cramp Fasciculation Syndrome (aka Peripheral Hyperexcitability syndrome) is something that happens to relatively young healthy adults who enjoy a lot of physical activity and sports. In some people, a tremor will develope first followed by twitching later on. The type of fasciculations involved in BCFS, BFS ... are not caused by dying nerves trying to reconnect, instead it is more of a static discharge. Pent up energy in the muscle fibers. So, an EMG/NCS will be normal. Another thing I read said that if you move the muscle while it is twitching, it will probably stop. Also, I did read one article that questioned a correlation with ADHD, and of course, if you worry excessively, it is suppose to be a good fit.
Stuff happens to us over the years that cause us to worry. That is normal. Your PCP is your best bet to explore possibilities.
For MYWILLOW,
I was googling the term "my muscles feel arthritic" (where, incidentally, mine do too), and then found several of your posts where I'm pretty sure by reading them that you have neuromyotonia or "Isaacs Syndrome." I suggest that you google "wiki neuromyotonia" or "isaacs syndrome forum," where I imagine you'll have a chill of recognition when you read up on the symptoms. Neuromyotonia is something like one out of a million, and is generally regarded as further out there on the peripheral nerve hyperexcitability spectrum than "simple" BFS, CFS or BCFS. And it's rare such that most neurologists have never seen a case (which hardly excuses any of them from not taking your complaints seriously IMO).
I'm just "passing through" and am posting this to hopefully offer some clarity. Will check in again soon to see if you or anyone has questions. I wish you all well.
I was googling the term "my muscles feel arthritic" (where, incidentally, mine do too), and then found several of your posts where I'm pretty sure by reading them that you have neuromyotonia or "Isaacs Syndrome." I suggest that you google "wiki neuromyotonia" or "isaacs syndrome forum," where I imagine you'll have a chill of recognition when you read up on the symptoms. Neuromyotonia is something like one out of a million, and is generally regarded as further out there on the peripheral nerve hyperexcitability spectrum than "simple" BFS, CFS or BCFS. And it's rare such that most neurologists have never seen a case (which hardly excuses any of them from not taking your complaints seriously IMO).
I'm just "passing through" and am posting this to hopefully offer some clarity. Will check in again soon to see if you or anyone has questions. I wish you all well.
Amandy
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Where did you get the statistics on neuromyotonia? I ask because there is so little information. My neuros are exploring it as a diff diagnosis out of the gate from being originally diagnosed with ALS.
Amandy, since neuromyotonia is rare, it is often better to get information from those afflicted rather than the non-specialist neurologist who has just maybe heard about or seen it themselves once or twice before. Symptoms certainly do vary from patient to patient, but for a quick outline of what neuromyotonia is most commonly about, you should go to pnhinfo.com. The site was created by someone who's had the disorder for years. I myself obviously am no expert, but I think one obvious differentiator between neuromyotonia and ALS might be that, with NMT, your muscles actually tend to remain "exercised" from all the cramps and twitches. Even Hypertrophying in many cases. In any case, an EMG would probably sort this out.
Wishing the best for you.
David
Wishing the best for you.
David
I think I did look at some of the info on Isaacs Syndrome before, not sure, but I think something made me question if it was a good fit or not, I'll have to go back and scope it out some more. I like investigating.
My hands are starting to ache a lot lately between the bones. Supposedly that would be because of those muscles going throught chronic denervation. It's not a horrible ache, more annoying. The thing I want to know the most is why I get to feel all this stuff happening. I'm not having the typical pins and needles neuropathy, or numbness: I get to have aches and pains. Whoopie!
My hands are starting to ache a lot lately between the bones. Supposedly that would be because of those muscles going throught chronic denervation. It's not a horrible ache, more annoying. The thing I want to know the most is why I get to feel all this stuff happening. I'm not having the typical pins and needles neuropathy, or numbness: I get to have aches and pains. Whoopie!
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