ImTwitching
New member
Folks,
Let me start off by saying “thanks!”. Thanks for helping me get my sanity back. I’m going to try to keep this on the lighter side…because I think we all could benefit from it. Having read hundreds of posts about BFS I (almost) believe I don’t have ALS. I’ve been suffering for a while…more on that later. I’m also a reasonably successful stand up comic. Think of the comedic potential of BFS. But to date, I’ve steered clear of it. Well, I’ll at least include some humor amongst my own personal observations below.
I really can’t remember when my fasciculations started. And I never thought I’d be able to spell “fasciculations”. I’m still not sure I know how to pronounce it. But from here on out, driven by laziness, I’m going to call them fascics. I know I’ve been having them for a couple of years. I never really paid much attention to them until I decided (not unlike the rest of you) to do a Yahoo search on “muscle twitches”. Well, that was pretty much the end of sanity and the beginning of “living will” planning for me. As you all know, the Internet would pretty much lead you to believe “if you have widespread twitching…you pretty much have ALS”. And it sure doesn’t go much beyond that unless you have the courage and stamina to dig deeper. Only then will you discover the other anomalies that cause fascics: blood imbalances, elevated liver enzymes, nutritional deficits, stress, BFS, etc. But before you get to that level of peace, you read the horrors of ALS. And my heart does go out to anyone who actually has it.
But it’s Halloween and this is supposed to be a fun day…so I’m not going to dwell on the darker side. Since I stumbled across the ALS sites, I’ve noticed that nearly every muscle in my body twitches…nothing is spared. And I’ve done all of the obvious things: pounded Magnesium until my stools turned gray (the scientific measurement that I’d had enough), gave up caffeine (and then started drinking it again), gave up beer (and then started drinking it again), tried not to think about it (yeah, that’s going to happen) and convinced myself that since I can still turn a key, stand up without using my arms, walk on my toes, walk on my heels, bench press hundreds of pounds, I must be okay.
And I’ve read the posts. We’re all very good at diagnosing each other as being completely fine. But deep down inside, we worry about ourselves: hmmm my calf looks strange…never noticed that indentation before. My forearm has a dent in it, no, wait, that’s spaghetti sauce. The gas pedal feels more difficult to push down today. The toothpaste squeeze cramped my forearm this morning. We all do it. Standing nude in front of the mirror (come on, you do it) and looking at one quadricep versus the other, one calf versus the other. I’ll even do the double mirror thing to see if one glute is the same size as the other. Thank God, my butt is symmetrical. It’s frightening. And why? because we stumbled across the most horrific explanation for twitching. Now I have no weakness, no atrophy, some brain fog, and horrendous twitching.
Have I had an EMG? No. And I don’t intend to. And I’ll tell you why. I’m surprised so many with twitches have gone to the GP and ultimately the neuro after reading posts from these sights. If it is ALS, there is nothing they can do for you anyway. And when you start dropping things, slurring, tripping, etc., I guess that’s reason to believe you’ve been struck. In the meantime, I’ll just keep twitching away. And I know myself well enough to realize that even if I got a clean bill of health, I’d still worry, and I’d still twitch.
I’m a hypochondriac from way back. I used to self-diagnose with a God-awful medical dictionary from the 70’s when I was a child. Had a rubbery lymph node, diagnosed Hodgkin’s disease. Had an itch that wouldn’t go away, diagnosed Grave’s disease. I was quite the doctor. I was always amazed by how I could go on living with so many devastating diseases. From there, I escalated my practice to the school library, followed by college libraries. I was seriously obsessed with my health. And this psychosis has only gotten worse with the advent of the medical information superhighway. Now, diagnoses are only a click away. I dread the day I did the Yahoo search for “twitches”. Now I’m an expert on the difference between “cramp”, “twitch”, “fasciculation” and “tremor”. I feel like I could diagnose BFS or ALS with the best of the neuros…definitely with the best of the GP’s.
I do have a personal theory regarding BFS. In addition to noticing the fireworks going off in my body, I’ve noticed something else. I’ve noticed a hypersensitivity to other vibration-causing elements if they somehow directly or indirectly touched me. I’ve noticed the fan running in my notebook computer bothers me (through my forearms) at times. If I’m leaning up against the kitchen counter I can tell if the dishwasher is running. I’m convinced the when you’re dwelling on fascics, your nervous system is cranked up to the max and you’re going to notice EVERY vibration X 10, whether it’s coming from inside your body or not. Now I have a horrible (and selective) memory, so I can’t really be sure if I’ve always had fascics or not. But I’m guessing that to a certain degree I always have. But now my mind is on constant watch for them. I have never had any that have awakened me from a sound sleep. And I don’t tend to notice them when I’m having fun. But when I’m surfing the web for ALS information, wondering if my typing skills are waning, my body is in a full-blown twitching symphony. Even a small muscle above my left ear flutters uncontrollably.
At the end of the day, I take comfort in the numbers. Realizing how rare ALS really is, and seeing how many people post concerns about BFS (also guessing that for every 1 who posts, there are likely a dozen who only read) I am convinced that it’s probably BFS. And since I’m quite sure I’ve been having them for several years, in the absence of atrophy or weakness, I’m giving myself the diagnosis of BFS. Does that mean I’m going to stop doing the reverse-mirror butt check? Probably not. Does that mean that I’m going to stop doing ad-hoc strength tests here and there? Probably not. But I am going to try to get on with my life and try to ignore the twitching. To my fellow twitchers: Happy Halloween and thanks for helping me to look at this objectively.
)
Let me start off by saying “thanks!”. Thanks for helping me get my sanity back. I’m going to try to keep this on the lighter side…because I think we all could benefit from it. Having read hundreds of posts about BFS I (almost) believe I don’t have ALS. I’ve been suffering for a while…more on that later. I’m also a reasonably successful stand up comic. Think of the comedic potential of BFS. But to date, I’ve steered clear of it. Well, I’ll at least include some humor amongst my own personal observations below.
I really can’t remember when my fasciculations started. And I never thought I’d be able to spell “fasciculations”. I’m still not sure I know how to pronounce it. But from here on out, driven by laziness, I’m going to call them fascics. I know I’ve been having them for a couple of years. I never really paid much attention to them until I decided (not unlike the rest of you) to do a Yahoo search on “muscle twitches”. Well, that was pretty much the end of sanity and the beginning of “living will” planning for me. As you all know, the Internet would pretty much lead you to believe “if you have widespread twitching…you pretty much have ALS”. And it sure doesn’t go much beyond that unless you have the courage and stamina to dig deeper. Only then will you discover the other anomalies that cause fascics: blood imbalances, elevated liver enzymes, nutritional deficits, stress, BFS, etc. But before you get to that level of peace, you read the horrors of ALS. And my heart does go out to anyone who actually has it.
But it’s Halloween and this is supposed to be a fun day…so I’m not going to dwell on the darker side. Since I stumbled across the ALS sites, I’ve noticed that nearly every muscle in my body twitches…nothing is spared. And I’ve done all of the obvious things: pounded Magnesium until my stools turned gray (the scientific measurement that I’d had enough), gave up caffeine (and then started drinking it again), gave up beer (and then started drinking it again), tried not to think about it (yeah, that’s going to happen) and convinced myself that since I can still turn a key, stand up without using my arms, walk on my toes, walk on my heels, bench press hundreds of pounds, I must be okay.
And I’ve read the posts. We’re all very good at diagnosing each other as being completely fine. But deep down inside, we worry about ourselves: hmmm my calf looks strange…never noticed that indentation before. My forearm has a dent in it, no, wait, that’s spaghetti sauce. The gas pedal feels more difficult to push down today. The toothpaste squeeze cramped my forearm this morning. We all do it. Standing nude in front of the mirror (come on, you do it) and looking at one quadricep versus the other, one calf versus the other. I’ll even do the double mirror thing to see if one glute is the same size as the other. Thank God, my butt is symmetrical. It’s frightening. And why? because we stumbled across the most horrific explanation for twitching. Now I have no weakness, no atrophy, some brain fog, and horrendous twitching.
Have I had an EMG? No. And I don’t intend to. And I’ll tell you why. I’m surprised so many with twitches have gone to the GP and ultimately the neuro after reading posts from these sights. If it is ALS, there is nothing they can do for you anyway. And when you start dropping things, slurring, tripping, etc., I guess that’s reason to believe you’ve been struck. In the meantime, I’ll just keep twitching away. And I know myself well enough to realize that even if I got a clean bill of health, I’d still worry, and I’d still twitch.
I’m a hypochondriac from way back. I used to self-diagnose with a God-awful medical dictionary from the 70’s when I was a child. Had a rubbery lymph node, diagnosed Hodgkin’s disease. Had an itch that wouldn’t go away, diagnosed Grave’s disease. I was quite the doctor. I was always amazed by how I could go on living with so many devastating diseases. From there, I escalated my practice to the school library, followed by college libraries. I was seriously obsessed with my health. And this psychosis has only gotten worse with the advent of the medical information superhighway. Now, diagnoses are only a click away. I dread the day I did the Yahoo search for “twitches”. Now I’m an expert on the difference between “cramp”, “twitch”, “fasciculation” and “tremor”. I feel like I could diagnose BFS or ALS with the best of the neuros…definitely with the best of the GP’s.
I do have a personal theory regarding BFS. In addition to noticing the fireworks going off in my body, I’ve noticed something else. I’ve noticed a hypersensitivity to other vibration-causing elements if they somehow directly or indirectly touched me. I’ve noticed the fan running in my notebook computer bothers me (through my forearms) at times. If I’m leaning up against the kitchen counter I can tell if the dishwasher is running. I’m convinced the when you’re dwelling on fascics, your nervous system is cranked up to the max and you’re going to notice EVERY vibration X 10, whether it’s coming from inside your body or not. Now I have a horrible (and selective) memory, so I can’t really be sure if I’ve always had fascics or not. But I’m guessing that to a certain degree I always have. But now my mind is on constant watch for them. I have never had any that have awakened me from a sound sleep. And I don’t tend to notice them when I’m having fun. But when I’m surfing the web for ALS information, wondering if my typing skills are waning, my body is in a full-blown twitching symphony. Even a small muscle above my left ear flutters uncontrollably.
At the end of the day, I take comfort in the numbers. Realizing how rare ALS really is, and seeing how many people post concerns about BFS (also guessing that for every 1 who posts, there are likely a dozen who only read) I am convinced that it’s probably BFS. And since I’m quite sure I’ve been having them for several years, in the absence of atrophy or weakness, I’m giving myself the diagnosis of BFS. Does that mean I’m going to stop doing the reverse-mirror butt check? Probably not. Does that mean that I’m going to stop doing ad-hoc strength tests here and there? Probably not. But I am going to try to get on with my life and try to ignore the twitching. To my fellow twitchers: Happy Halloween and thanks for helping me to look at this objectively.
)