silverpilateplatinum
New member
Hello everyone, I've been perusing this board for a while, but I just now joined up. I thought I would share my experiences.I'm 34 years old, and I'm a physical therapist specializing in neurologic conditions. I teach doctor of PT students neuroscience and neuro-rehab among other topics full time, so I started this whole process knowing WAY too much. 
) In February of 2011, my wife and I had a baby. About 2 months later, I NOTICED twitching. I think I had probably been twitching a month or so prior to first paying attention to it, but I clearly remember when this whole fear/anxiety thing started up. I was in my office working on a lecture when I experienced a persistent fasciculation in the side of my thumb. I'd always noticed random twitches throughout my life and thought they were kind of funny little events, but this one hung on for hours. The problem with me, is that I know ALS. Heck, I teach it to students. I've watched patients die from ALS. "Oh my....do I have ALS?" The rational side of my brain should have kicked in right there, but we all know that this is not a rational condition. That night and over the subsequent several nights, all I could focus on was twitching. I was so focused on my body that I could feel every heart beat in any area of the body I was focused on, and of course, I had twitches EVERYWHERE. All the time. Little twitches, big twitches, vibrations, possibly imagined twitches. The more I focused on twitching, the more I had. 
Senseless and irrational anxiety ate me alive. If it was me on my own, I don't think I would have been as amped up. However, all I could think about was not being there for my wife and son. I started manual muscle testing myself, which of course, made things worse. I had colleagues muscle test me. I tested myself for upper motor neuron signs. I felt weak. I started focusing on my gait: "did I just catch my toe?" I had a hard time holding my arms up. I had issues with my throat when swallowing. After stringing myself along for several months, I finally talked to my doc about it and pursued an EMG. I went to a doc who is a personal friend of mine whom I've worked closely with through the years, and he did my EMG/NCS, talking me through what he was seeing and the results as we went. Of course, at the appointment, I had not a single twitch. 
He tested throughout the lower and upper extremity. Everything looked normal. He told me he wasn't sure what was going on with the twitches, but I didn't show any signs of anything concerning. Funny thing, after that appointment, my twitches all but disappeared....for a time.Since that first bout, I have a "flare" of symptoms every 2-3 months that lasts for about 2 months. These flares typically start when I notice something different than I've noticed before or when a particularly bothersome twitch shows up. Every time a flare starts, I start up the irrational anxiety and the fear of a nefarious disease. Here are a list of symptoms I've had over the last two years:-Twitches, thumpers, vibrations occurring randomly or for up to 2 weeks at a time in a specific location-Twitches in these areas at various times: foot, toe, calf, quad, hamstring, abdominal, shoulder, arm, hand, fingers, neck, corner of mouth, eye, lips, tongue-Twitches at rest, twitches that go away with contraction, twitches that start after contraction, twitches that continue during contraction, twitches that start with certain pressures or postures (i.e. arm resting on the edge of desk results in hand twitches)-Anxiety related throat issues: globus sensation, subjective difficulty of swallowing food on either side or in general, tightness in throat and base of tongue, sensation of aspiration of fluids (funny thing...also had bronchitis at the time but my mind refused to see it as the obvious cause of coughing)-Severe health anxiety and fear of ALS-Feeling like I'm fumbling over my words in talking-Deep aching pains randomly in various muscles, usually in the thenars/hypothenars and arch of the foot-Feeling of tightness in gastroc-Subjective weakness of arms/shoulders, hands/grip, thumb, ankle, quads-Crawling sensation on my face and scalp (probably due to chronic hyperventilation during anxiety flares)-Overwhelming fatigue at times-Difficulty concentrating or enjoying life-Fear of and "discover" of muscle differences and asymmetries ("Oh no...am I wasting there??")I'm sure there are more to list, and I've actually thought about logging my symptoms in a journal to reassure myself. I always seem to freak myself out, even though I've been through all of these symptoms multiple times without issue.A few theories I have.... I had psoriasis as a kiddo. I have occasional flares of very mild psoriatic arthritis. My twitches tend to follow along the timing of arthritis flares. Could this be a systemic inflammatory process leading to this peripheral nerve hyper-excitability/irritability? I also have GI issues and severe reflux. I know this contributes to my throat symptoms which often result in a bout of anxiety. I've also read it's a common issue among those with BFS. I am worse when I don't get enough sleep over multiple days. When I can get 8-9 hours of sleep a night, I do much better.Here's the bottom line. I've been twitching for 2 years. I have no more "weakness" or other signs than I did when all of this started other than the occasionally relentless anxiety and random "new" twitch or symptom I've not had before. I know the "big one" is a relentlessly progressive disease. It does not appear like this. It does not jump around all over the place and start and stop randomly. Heck, statistically half of all patients with it would be in a WC or deceased at 2 years in, and I'm still kicking along. My flares start with a twitch, progress to anxiety, perpetuate the twitch and other symptoms, and then usually fade when I can come to the point of dismissing the fear. This is an anxiety disorder as much as anything. Funny thing is that I read somewhere many people who suffer with BFS are highly educated or even in the medical profession. We know to much, or we look up too much. Joe Blow who starts twitching while working in the field probably just says, "huh...weird" and keeps on with his life, never having a problem. We spend hours on the internet trying to find anyone else whose had EXACTLY the same symptom that we're currently experiencing in an effort to reduce our fear. We look up disease processes just to find any similarity so that we can perpetuate or alleviate our fears.Do I still fear the big diagnosis even though I really know better and have had a clear EMG? Absolutely. My wife wants me to get a followup EMG to compare to the baseline for her peace of mind and my own. I hesitate to do it, because I know it will spark a new onset of anxiety leading up to it. Ultimately though, I'm here. I'm still twitching. And I'm still alive, apparently no worse for the wear. I'm educated enough to know what ALS looks like, but I still irrationally fear it. I have to remind myself: my God is a not a God of fear and bondage to fear but a God of freedom.May all of us find freedom from the fear that binds us up so tightly.God bless,--Nathan
) In February of 2011, my wife and I had a baby. About 2 months later, I NOTICED twitching. I think I had probably been twitching a month or so prior to first paying attention to it, but I clearly remember when this whole fear/anxiety thing started up. I was in my office working on a lecture when I experienced a persistent fasciculation in the side of my thumb. I'd always noticed random twitches throughout my life and thought they were kind of funny little events, but this one hung on for hours. The problem with me, is that I know ALS. Heck, I teach it to students. I've watched patients die from ALS. "Oh my....do I have ALS?" The rational side of my brain should have kicked in right there, but we all know that this is not a rational condition. That night and over the subsequent several nights, all I could focus on was twitching. I was so focused on my body that I could feel every heart beat in any area of the body I was focused on, and of course, I had twitches EVERYWHERE. All the time. Little twitches, big twitches, vibrations, possibly imagined twitches. The more I focused on twitching, the more I had. Senseless and irrational anxiety ate me alive. If it was me on my own, I don't think I would have been as amped up. However, all I could think about was not being there for my wife and son. I started manual muscle testing myself, which of course, made things worse. I had colleagues muscle test me. I tested myself for upper motor neuron signs. I felt weak. I started focusing on my gait: "did I just catch my toe?" I had a hard time holding my arms up. I had issues with my throat when swallowing. After stringing myself along for several months, I finally talked to my doc about it and pursued an EMG. I went to a doc who is a personal friend of mine whom I've worked closely with through the years, and he did my EMG/NCS, talking me through what he was seeing and the results as we went. Of course, at the appointment, I had not a single twitch. He tested throughout the lower and upper extremity. Everything looked normal. He told me he wasn't sure what was going on with the twitches, but I didn't show any signs of anything concerning. Funny thing, after that appointment, my twitches all but disappeared....for a time.Since that first bout, I have a "flare" of symptoms every 2-3 months that lasts for about 2 months. These flares typically start when I notice something different than I've noticed before or when a particularly bothersome twitch shows up. Every time a flare starts, I start up the irrational anxiety and the fear of a nefarious disease. Here are a list of symptoms I've had over the last two years:-Twitches, thumpers, vibrations occurring randomly or for up to 2 weeks at a time in a specific location-Twitches in these areas at various times: foot, toe, calf, quad, hamstring, abdominal, shoulder, arm, hand, fingers, neck, corner of mouth, eye, lips, tongue-Twitches at rest, twitches that go away with contraction, twitches that start after contraction, twitches that continue during contraction, twitches that start with certain pressures or postures (i.e. arm resting on the edge of desk results in hand twitches)-Anxiety related throat issues: globus sensation, subjective difficulty of swallowing food on either side or in general, tightness in throat and base of tongue, sensation of aspiration of fluids (funny thing...also had bronchitis at the time but my mind refused to see it as the obvious cause of coughing)-Severe health anxiety and fear of ALS-Feeling like I'm fumbling over my words in talking-Deep aching pains randomly in various muscles, usually in the thenars/hypothenars and arch of the foot-Feeling of tightness in gastroc-Subjective weakness of arms/shoulders, hands/grip, thumb, ankle, quads-Crawling sensation on my face and scalp (probably due to chronic hyperventilation during anxiety flares)-Overwhelming fatigue at times-Difficulty concentrating or enjoying life-Fear of and "discover" of muscle differences and asymmetries ("Oh no...am I wasting there??")I'm sure there are more to list, and I've actually thought about logging my symptoms in a journal to reassure myself. I always seem to freak myself out, even though I've been through all of these symptoms multiple times without issue.A few theories I have.... I had psoriasis as a kiddo. I have occasional flares of very mild psoriatic arthritis. My twitches tend to follow along the timing of arthritis flares. Could this be a systemic inflammatory process leading to this peripheral nerve hyper-excitability/irritability? I also have GI issues and severe reflux. I know this contributes to my throat symptoms which often result in a bout of anxiety. I've also read it's a common issue among those with BFS. I am worse when I don't get enough sleep over multiple days. When I can get 8-9 hours of sleep a night, I do much better.Here's the bottom line. I've been twitching for 2 years. I have no more "weakness" or other signs than I did when all of this started other than the occasionally relentless anxiety and random "new" twitch or symptom I've not had before. I know the "big one" is a relentlessly progressive disease. It does not appear like this. It does not jump around all over the place and start and stop randomly. Heck, statistically half of all patients with it would be in a WC or deceased at 2 years in, and I'm still kicking along. My flares start with a twitch, progress to anxiety, perpetuate the twitch and other symptoms, and then usually fade when I can come to the point of dismissing the fear. This is an anxiety disorder as much as anything. Funny thing is that I read somewhere many people who suffer with BFS are highly educated or even in the medical profession. We know to much, or we look up too much. Joe Blow who starts twitching while working in the field probably just says, "huh...weird" and keeps on with his life, never having a problem. We spend hours on the internet trying to find anyone else whose had EXACTLY the same symptom that we're currently experiencing in an effort to reduce our fear. We look up disease processes just to find any similarity so that we can perpetuate or alleviate our fears.Do I still fear the big diagnosis even though I really know better and have had a clear EMG? Absolutely. My wife wants me to get a followup EMG to compare to the baseline for her peace of mind and my own. I hesitate to do it, because I know it will spark a new onset of anxiety leading up to it. Ultimately though, I'm here. I'm still twitching. And I'm still alive, apparently no worse for the wear. I'm educated enough to know what ALS looks like, but I still irrationally fear it. I have to remind myself: my God is a not a God of fear and bondage to fear but a God of freedom.May all of us find freedom from the fear that binds us up so tightly.God bless,--Nathan
I guess it's been a while since I've had a bothersome hot spot other than a random eyelid or tongue twitch that lasts a few days (had an eyelid twitch last several weeks