Alpha2zDave
Active member
Greetings All,
I have not posted to this website before, nor to any website really, but having had a recent experience with BFS, I felt moved to try to alleviate the anxiety of others by sharing my experiences. I realise how resistant some of our more morbid fantasies can be to attempts by logic to expel them, but I found my own reading of the stories on this site to be of immense value. Please be aware this post is quite long.
Late last year, I lost a friend when he died very suddenly from a cardiac condition. My sadness over his death contributed to a sense of depression and fatalism that had been taking root in my psyche for several months, and in January of this year, as I was sitting quietly at my computer, I had a full-blown panic attack, the first I had had for many years. I had convinced myself that my heart was weak and was just about to stop beating, just as my friend’s had.
I tried to dismiss this first panic attack as a momentary lapse, but I soon found that I was unable to quell the overpowering sense that there was something wrong with my heart. I began to have panic attacks almost constantly, particularly at night, but also during the day while I was at work, where I found it increasingly difficult to conceal my discomfort. It is very difficult to hide the fact that you are having a panic attack when you are sitting across a small table from someone whom you are meant to be having a meeting with!
It didn’t take me long to seek out medical advice – after an ECG I was assured that my heart was perfectly fine, and that occasional palpitations were normal. Tellingly, I didn’t mention having panic attacks, which I felt would probably sort themselves out once I got this reassurance.
Of course, they didn’t, and I became increasingly aware of a new sensation. A strange flicker, just under my left rib cage, which seemed to come and go and occasionally be accompanied by a corresponding sensation in my upper forehead. Given the proximity of this odd pulsating feeling to my heart, my panic attacks began afresh.
My second doctor prescribed a medication to calm my stomach. It didn’t help. I sought a third opinion, and was finally reassured by a very understanding, thorough doctor, who explained the workings of my heart and discussed with me my feelings about my friend’s death. I left feeling euphoric and determined to grab life by the horns.
Unfortunately, my twitch didn’t take the opportunity to subside. I’m not sure at what point I realised that it had migrated to my legs, but eventually I was getting little twitches all over my body. Mostly, these twitches felt like small grapepie rising to the surface of my muscles and breaking just below the skin, sometimes very rapidly. Others felt like little ‘burrrs’ or pops. Others, particularly those in my biceps, could cause the entire muscle to move. My forearms twitched, my thighs, my eyebrows, my upper back, my buttocks.
Of course, at this point I didn’t really know anything about ALS; it is, after all, quite rare, and generally not a consideration for people of my age (mid-twenties). Unfortunately, as contributors to these forums are only too well aware, there is a veritable mine of medical information available to laypeople in electronic format, and it wasn’t long before I was fully conversant in the pathology of this awful disease.
To put it mildly, I was concerned. One weekend I went to a wedding and, despite not having a drop of alcohol, felt unnaturally fatigued and occasionally dizzy. The next day, I woke up with an odd feeling of weakness in my right hand. I couldn’t grip my knife properly, and as the day went on, I felt my right ankle suddenly become stiff also. I limped around for a few hours.
Although my strength returned, I hurried back to my sympathetic doctor, who assured me that my condition was benign and probably caused by anxiety. I was unconvinced. He was only a GP (General Practitioner) after all, and I knew from my lopsided research that conditions like ALS and MS generally have to be diagnosed by a specialist. I made an appointment with a neurologist recommended by my doctor, but the first available time was over a month away. I wasn’t sure how I would cope with the uncertainty.
I returned to work, but was completely ineffective. I experienced one horror week where I merely sat at my desk for hours at a time, almost paralysed by terror. I stared out the window and contemplated my imminent demise. It was during this time that I began to develop more and more nuanced fantasies about my future life with a debilitating, progressive neurological condition, as my muscles buzzed around me. I suppose I thought most about the nightmarish circumstances of late-stage ALS patients, who are utterly immobilised or ‘locked-in’. I couldn’t imagine how I would cope with knowing that I was going to be reduced to living in this ‘glass coffin’. All the while, I fuelled my obsession by reading the personal accounts of those afflicted with ALS and their loved ones.
Eventually, I could barely pass a minute without thinking about ALS. I obsessed over whether or not my family and I would be able to afford the machinery required to extend my miserable life. I changed my diet to consist mostly of whole, organic foods, and bought alternatives to the products that I felt were poisoning my brain with toxins. I researched alternative healing methods and read, with no small amount of desperation, about the exciting advances being made with stem-cell therapy. I rejoiced when I heard about the ALS patients who went to China to be treated with a controversial new foetal cell procedure and experienced miraculous gains. I despaired when those gains turned out to be fleeting. I read about Stephen Hawking’s remarkable longevity, as someone who had contracted ALS as a younger man than I presently was. I learnt about ‘migratory fasciculations’, ‘fibrillations versus fasciculations’, ‘bulbar palsy’ and ‘anterior horn cells’.
And, of course, I did the tests.
I did push-ups and ran up flights of stairs. I squeezed a stress ball every morning and counted the number of squeezes I could do before my hands seized. I bought a ‘theraband’ and used it to flex many muscles that had not been worked for some time. Invariably, I found myself to be about as strong as I could legitimately expect. I tend to have a fair amount of natural muscle tone, and I couldn’t detect any atrophy; my muscles were just as hard as ever and leapt to attention when I commanded them to do so. This didn’t stop me from testing, however. I was convinced that the weakness would come; it was just a matter of time. So I kept up my regime, in various guises.
Mostly, I just made myself aware of the twitches, which is really a form of testing. This included habitually placing my hands on affected areas to see if I could feel the twitches with two parts of my body simultaneously (thereby dissuading myself of the possibility that they were imagined). My calf muscles particularly disturbed me. I’ve always had especially strong calf muscles, probably a legacy of a lot of bike riding as a kid. Now my calves had become a focal point for my apprehension. I could feel them twitching almost constantly during the day, and was horrified when one day as I lay on my bed reading (or trying to read) I looked down to see them rippling with twitches that I could barely feel. Surely, I thought, there can be only one explanation for that kind of unnatural activity.
I then became convinced I was experiencing other hallmark symptoms of ALS, particularly difficulty with swallowing. I chewed food into tiny, desiccated lumps before struggling to force them down my throat, which seemed to be constantly filled with thick secretions that I understood to be another characteristic of bulbar onset ALS. I spent some time examining my swallowing action, sometimes in tandem with my tongue, which I would stick out at myself in the mirror, then fearfully withdraw when I noticed it (quite naturally) quiver with the exertion.
I was by this stage, in the grip of the worst anxiety I had probably ever experienced. Although I was no longer having panic attacks, there was something about the insidious, hopeless, dehumanising nature of that disease, ALS, which haunted and repulsed me. I had to take more and more days off work as I battled my preoccupation. My family were hugely supportive, but they were unable to put my thinking back on a rational footing. I knew I would have to do something about my mental state. Even if I did have ALS, I reasoned, I wouldn’t be able to enjoy what time I had left if I felt this bad all the time. I sought out my sympathetic doctor for a third time. Thankfully, he prescribed an anti-depressant, Lexapro, on the smallest possible dose.
So, after about a week, I was feeling substantially more positive. My twitches remained, but I was philosophical; if I had ALS, I would have to deal with it. If not, I was going to make the most of my life from now on. Increasingly, I began to disregard my twitches, and in that action began to return to a sense of normalcy. Once I had stopped constant self-monitoring, it began to seem quite obvious to me that I was in fact well, just having a few harmless twitches. Of course, I still sought out complete peace of mind by consulting a neurologist, but by the time the appointment for EMG came around a few months later, I already knew the diagnosis: Benign fasciculations.
I’m unsure of what final observations I can offer to people with BFS who are going through the anxieties that seem to be common to almost everyone who has BFS and access to the Internet. Perhaps it will help to bring into sharper relief the cruel dichotomy which all undiagnosed (and many diagnosed) BFS sufferers face: On the one hand, they could have a perfectly harmless condition that will either run its own course or accompany them into old age, or they could have a terrible fatal disease that will rapidly rob them of their ability to move, communicate, eat, and finally breathe. In some ways, it almost seems unfair to be presented with such stark alternatives. But it needn’t be. This experience has caused me to reflect on a number of phenomena, mostly concerned with disease and our responses to the threat of disease, but also with the philosophy of truly essential topics like mortality, consciousness, fate. Eventually, I was forced to question my fears; why was it that I was so terrified by the thought of my own death, especially when so many others, who have led far poorer lives, have suffered so much more. I thought about the contributions I have so far made, and how I could have done more, and still could. I thought about the things I could do even if I were sick to help others in need, and to enrich my own mind. I thought about how so much of my distress might just be rooted in the excessive individualism our society promotes, and how I could probably dismiss it if I dispensed with self-obsession and just felt more connected to my fellows. And so inevitably, I thought most of all about my beautiful family and beloved girlfriend. More than anything, this experience has made me realise how fortunate I am to have had them in my life and how lucky I will be if I live long enough to have my own family, to bring my own children into that warm circle.
There are bigger things in the world than me. At some time, we are all faced with our own deaths, and whether we live to be ninety or nineteen, the questions we’ll ask of ourselves will be largely the same.
But then, I suspect that most of you don’t really want to hear my third-rate sentimentalising. Most of you probably just want to be reassured that you don’t have ALS. I can only point to my own experiences – if they sound similar to yours, you almost certainly don’t.
I have not posted to this website before, nor to any website really, but having had a recent experience with BFS, I felt moved to try to alleviate the anxiety of others by sharing my experiences. I realise how resistant some of our more morbid fantasies can be to attempts by logic to expel them, but I found my own reading of the stories on this site to be of immense value. Please be aware this post is quite long.
Late last year, I lost a friend when he died very suddenly from a cardiac condition. My sadness over his death contributed to a sense of depression and fatalism that had been taking root in my psyche for several months, and in January of this year, as I was sitting quietly at my computer, I had a full-blown panic attack, the first I had had for many years. I had convinced myself that my heart was weak and was just about to stop beating, just as my friend’s had.
I tried to dismiss this first panic attack as a momentary lapse, but I soon found that I was unable to quell the overpowering sense that there was something wrong with my heart. I began to have panic attacks almost constantly, particularly at night, but also during the day while I was at work, where I found it increasingly difficult to conceal my discomfort. It is very difficult to hide the fact that you are having a panic attack when you are sitting across a small table from someone whom you are meant to be having a meeting with!
It didn’t take me long to seek out medical advice – after an ECG I was assured that my heart was perfectly fine, and that occasional palpitations were normal. Tellingly, I didn’t mention having panic attacks, which I felt would probably sort themselves out once I got this reassurance.
Of course, they didn’t, and I became increasingly aware of a new sensation. A strange flicker, just under my left rib cage, which seemed to come and go and occasionally be accompanied by a corresponding sensation in my upper forehead. Given the proximity of this odd pulsating feeling to my heart, my panic attacks began afresh.
My second doctor prescribed a medication to calm my stomach. It didn’t help. I sought a third opinion, and was finally reassured by a very understanding, thorough doctor, who explained the workings of my heart and discussed with me my feelings about my friend’s death. I left feeling euphoric and determined to grab life by the horns.
Unfortunately, my twitch didn’t take the opportunity to subside. I’m not sure at what point I realised that it had migrated to my legs, but eventually I was getting little twitches all over my body. Mostly, these twitches felt like small grapepie rising to the surface of my muscles and breaking just below the skin, sometimes very rapidly. Others felt like little ‘burrrs’ or pops. Others, particularly those in my biceps, could cause the entire muscle to move. My forearms twitched, my thighs, my eyebrows, my upper back, my buttocks.
Of course, at this point I didn’t really know anything about ALS; it is, after all, quite rare, and generally not a consideration for people of my age (mid-twenties). Unfortunately, as contributors to these forums are only too well aware, there is a veritable mine of medical information available to laypeople in electronic format, and it wasn’t long before I was fully conversant in the pathology of this awful disease.
To put it mildly, I was concerned. One weekend I went to a wedding and, despite not having a drop of alcohol, felt unnaturally fatigued and occasionally dizzy. The next day, I woke up with an odd feeling of weakness in my right hand. I couldn’t grip my knife properly, and as the day went on, I felt my right ankle suddenly become stiff also. I limped around for a few hours.
Although my strength returned, I hurried back to my sympathetic doctor, who assured me that my condition was benign and probably caused by anxiety. I was unconvinced. He was only a GP (General Practitioner) after all, and I knew from my lopsided research that conditions like ALS and MS generally have to be diagnosed by a specialist. I made an appointment with a neurologist recommended by my doctor, but the first available time was over a month away. I wasn’t sure how I would cope with the uncertainty.
I returned to work, but was completely ineffective. I experienced one horror week where I merely sat at my desk for hours at a time, almost paralysed by terror. I stared out the window and contemplated my imminent demise. It was during this time that I began to develop more and more nuanced fantasies about my future life with a debilitating, progressive neurological condition, as my muscles buzzed around me. I suppose I thought most about the nightmarish circumstances of late-stage ALS patients, who are utterly immobilised or ‘locked-in’. I couldn’t imagine how I would cope with knowing that I was going to be reduced to living in this ‘glass coffin’. All the while, I fuelled my obsession by reading the personal accounts of those afflicted with ALS and their loved ones.
Eventually, I could barely pass a minute without thinking about ALS. I obsessed over whether or not my family and I would be able to afford the machinery required to extend my miserable life. I changed my diet to consist mostly of whole, organic foods, and bought alternatives to the products that I felt were poisoning my brain with toxins. I researched alternative healing methods and read, with no small amount of desperation, about the exciting advances being made with stem-cell therapy. I rejoiced when I heard about the ALS patients who went to China to be treated with a controversial new foetal cell procedure and experienced miraculous gains. I despaired when those gains turned out to be fleeting. I read about Stephen Hawking’s remarkable longevity, as someone who had contracted ALS as a younger man than I presently was. I learnt about ‘migratory fasciculations’, ‘fibrillations versus fasciculations’, ‘bulbar palsy’ and ‘anterior horn cells’.
And, of course, I did the tests.
I did push-ups and ran up flights of stairs. I squeezed a stress ball every morning and counted the number of squeezes I could do before my hands seized. I bought a ‘theraband’ and used it to flex many muscles that had not been worked for some time. Invariably, I found myself to be about as strong as I could legitimately expect. I tend to have a fair amount of natural muscle tone, and I couldn’t detect any atrophy; my muscles were just as hard as ever and leapt to attention when I commanded them to do so. This didn’t stop me from testing, however. I was convinced that the weakness would come; it was just a matter of time. So I kept up my regime, in various guises.
Mostly, I just made myself aware of the twitches, which is really a form of testing. This included habitually placing my hands on affected areas to see if I could feel the twitches with two parts of my body simultaneously (thereby dissuading myself of the possibility that they were imagined). My calf muscles particularly disturbed me. I’ve always had especially strong calf muscles, probably a legacy of a lot of bike riding as a kid. Now my calves had become a focal point for my apprehension. I could feel them twitching almost constantly during the day, and was horrified when one day as I lay on my bed reading (or trying to read) I looked down to see them rippling with twitches that I could barely feel. Surely, I thought, there can be only one explanation for that kind of unnatural activity.
I then became convinced I was experiencing other hallmark symptoms of ALS, particularly difficulty with swallowing. I chewed food into tiny, desiccated lumps before struggling to force them down my throat, which seemed to be constantly filled with thick secretions that I understood to be another characteristic of bulbar onset ALS. I spent some time examining my swallowing action, sometimes in tandem with my tongue, which I would stick out at myself in the mirror, then fearfully withdraw when I noticed it (quite naturally) quiver with the exertion.
I was by this stage, in the grip of the worst anxiety I had probably ever experienced. Although I was no longer having panic attacks, there was something about the insidious, hopeless, dehumanising nature of that disease, ALS, which haunted and repulsed me. I had to take more and more days off work as I battled my preoccupation. My family were hugely supportive, but they were unable to put my thinking back on a rational footing. I knew I would have to do something about my mental state. Even if I did have ALS, I reasoned, I wouldn’t be able to enjoy what time I had left if I felt this bad all the time. I sought out my sympathetic doctor for a third time. Thankfully, he prescribed an anti-depressant, Lexapro, on the smallest possible dose.
So, after about a week, I was feeling substantially more positive. My twitches remained, but I was philosophical; if I had ALS, I would have to deal with it. If not, I was going to make the most of my life from now on. Increasingly, I began to disregard my twitches, and in that action began to return to a sense of normalcy. Once I had stopped constant self-monitoring, it began to seem quite obvious to me that I was in fact well, just having a few harmless twitches. Of course, I still sought out complete peace of mind by consulting a neurologist, but by the time the appointment for EMG came around a few months later, I already knew the diagnosis: Benign fasciculations.
I’m unsure of what final observations I can offer to people with BFS who are going through the anxieties that seem to be common to almost everyone who has BFS and access to the Internet. Perhaps it will help to bring into sharper relief the cruel dichotomy which all undiagnosed (and many diagnosed) BFS sufferers face: On the one hand, they could have a perfectly harmless condition that will either run its own course or accompany them into old age, or they could have a terrible fatal disease that will rapidly rob them of their ability to move, communicate, eat, and finally breathe. In some ways, it almost seems unfair to be presented with such stark alternatives. But it needn’t be. This experience has caused me to reflect on a number of phenomena, mostly concerned with disease and our responses to the threat of disease, but also with the philosophy of truly essential topics like mortality, consciousness, fate. Eventually, I was forced to question my fears; why was it that I was so terrified by the thought of my own death, especially when so many others, who have led far poorer lives, have suffered so much more. I thought about the contributions I have so far made, and how I could have done more, and still could. I thought about the things I could do even if I were sick to help others in need, and to enrich my own mind. I thought about how so much of my distress might just be rooted in the excessive individualism our society promotes, and how I could probably dismiss it if I dispensed with self-obsession and just felt more connected to my fellows. And so inevitably, I thought most of all about my beautiful family and beloved girlfriend. More than anything, this experience has made me realise how fortunate I am to have had them in my life and how lucky I will be if I live long enough to have my own family, to bring my own children into that warm circle.
There are bigger things in the world than me. At some time, we are all faced with our own deaths, and whether we live to be ninety or nineteen, the questions we’ll ask of ourselves will be largely the same.
But then, I suspect that most of you don’t really want to hear my third-rate sentimentalising. Most of you probably just want to be reassured that you don’t have ALS. I can only point to my own experiences – if they sound similar to yours, you almost certainly don’t.
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