Living With BFS in Taiwan

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yumnoyumna

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Hello everyone,My name is Spencer. I apologize in advance for the length of this message, however, please bear with me. I believe that my experiences over the last few months may help broaden the understanding of BFS and how it may develop. Also, thanks in advance for reading!In February I moved from Atlanta, Georgia to Taipei, Taiwan to teach English for a year. Unfortunately, I suffered an electrical injury from a wet light switch (110v, 15 amps) in my apartment on March 17, 2013.The next day I went to the city hospital and saw a neurologist because something felt off. He noted that I had decreased PrickLedPin sensation and some numbness/tingling in my right forearm and hand. I also had a great deal of pain running along the nerves in my arms, particularly underneath the bicep and along my forearm. He prescribed me some Vitamin B12 capsules (Methylcobalamin), along with a low dose of oral Prednisolone (Compesolon).Although this may misguide some people, I do have to say that during these initial few days I felt very anxious and worried about my future health. When the neurologist noted that I had decreased sensation I immediately went home and began researching electrical injury. I didn't know beforehand but apparently there is a controversial but possible relationship between electrical injury and the onset of Motor Neuron Disease and ALS-like syndromes. Also, I had just recently moved to a foreign country and was experiencing the full effects of culture shock so this may have added to my worry.Surprisingly, the numbness and tingling in my right forearm and hand resolved within a day or two. The pain remains but is not entirely unbearable. Now this is where it gets interesting. About 4 days after the accident I noticed that my biceps felt like they were shuddering or jumping when I performed actions. I started to perform different motions to see if I could notice anything unusual. Sure enough, I could see my biceps wiggle during certain motions. It was particularly noticeable if I placed my wrist at my shoulder and then elongated my arm completely at a medium speed. Within another day or two I started noticing that other muscle groups were doing the same thing. When descending down stairs I could feel my quadriceps shudder and jump. When bending over to pick something up off the ground, my lower back and pectoral muscles would shudder and jump. Within two weeks basically every muscle group from my jaw down, including my fingers, was experiencing this strange jerky movement pattern.I decided to visit the National Taiwan University Hospital. The neurologists there had never seen this condition and also had limited knowledge of electrical injuries. They decided to run a few tests. The first was an SEP (Somatosensory Evoked Potentials) test on my arms and legs, the next was a Cervical Spine MRI, and the last was an EMG test (including needle EMG) on my arms. They also performed a blood test looking for CPK and general inflammatory responses. All of these returned normal results - leading the doctors to conclude that I did not have a diagnosable medical condition and that if there was damage from the electric shock then the tests were not sensitive enough to detect it.My own research at home was just as fruitless. I researched for hours each day and learned as much as possible about movement disorders. However my symptoms were no where to be found. I did not have spacticity, rigitidy, hypertonia, clonus, myoclonus or any other of the standard symptoms present in neurological dysfunction. I decided to go back to the NTU Hospital and visit their physical therapy department. The doctor there noted something important - my shuddering and muscle jerking only occurred during eccentric contractions. (This term describes one of three possible states of muscle contraction. In this state, two muscles contract simultaneously with different amounts of tension in order to produce fluid movements. This is opposed to an isometric contraction where the muscles contract but do not move, and a concentric contraction where the muscle shortens as it contracts. A prime example of an eccentric contraction is the extending of the arm from a bent position - the bicep and tricep contract simultaneously with different amounts of force to let the arm slowly extend.)Each time I learned more and came up with possibilities I went back to the neurologists and tried a new slew of medications to change or alter the muscle shaking. Over the course of April, May, and June I tried every drug imaginable including Imiprimine (tricyclic antidepressant to try and raise the resting potential of my neurons), Propranolol (beta-blocker to prevent anxiety induced adrenaline from affecting my nervous system), multiple muscle relaxers, Clonazepam (Klonapin, to reduce anxiety and prevent nervous system overactivity), Baclofen (to eliminate spasticity which wasn't actually present), and Alprazolam (Xanax, benzodiazepine to reduce anxiety). Although I took them in properly dosed shifts and for the recommended amount of time, these medications did nothing to change the muscle shaking.After a while, my fear of my body becoming permanently disabled gave way to frustration and I started to research again. Finally, after months of searching, I found a post by "Caliburn" on an ALS forum describing the exact same muscle condition that I was describing. He called it "muscle ratcheting." I decided to use this as a search term and then Eureka! I came across this forum and found post after post of individuals describing the exact same muscle "ratcheting" that I had been experiencing for months! Some of the terminology that people were using was incorrect, and some individuals were confusing this condition with the more common "cog-wheel rigidity" found in Parkinson's disease (which is passive resistance to externally induced movement). However, the descriptions of their symptoms were so precisely like what I had tried to explain to my doctors that I knew I had found my elusive condition.Strangely though, I was not experiencing many fasciculations. After tapering off of the Alprazolam (Xanax) a few weeks earlier, I had experienced a few days of intense twitching, but this is a common side effect of benzodiazapine withdrawl. Besides, I was still on an anti-depressant and other psychoactive medications which can produce strange muscle/nerve related side effects so I didn't even consider the occasional fasciculation to be unusual. Until this accident I never really had muscle fasciculations of any significance.I have two other issues related to the shock including fine tremors in my fingers on both hands and continuing pain/stiffness/numbness in my right arm. However, I am posting here primarily because of the muscle ratcheting. After reading pretty much every post written by the small group of BFS sufferers with the "dreaded ratcheting" condition I have noticed that no one else had any specific trauma related to the onset of their symptoms. This is both puzzling and intriguing for me. So I want to ask:Do you all think it is possible that my ratcheting was begun by my extreme anxiety immediately following the shock? Or do you think that it is possible that there has been a change in my nervous system that the neurological tests are simply unable to detect?I have read numerous studies demonstrating EMG confirmed changes in the ion channels of motor neurons of lab rats following a purposefully administered electric shock, but I have also read many accounts of people who believe that their BFS was begun and highly aggravated solely by their anxiety.I have gathered a huge amount of information about my specific circumstances (test results, symptomology), as well as BFS in general. If you would like clarification or elaboration on any of the points that I have mentioned please send me a message and I will get back to you. My hope is that this thread may lead to some informed discussion and provide possible research avenues for myself and the doctors upon my return to the states.Sincerely,SpencerP.S. - A little about myself: I am 24 years old, 5'11, 155 lbs, I weight train about 5-6 times a week so I'm in good shape. Non-smoker, light drinker, no drug use.
 
Hello,as our fellow TwitchBFS says, 'another athlet" ;))0 for some reasons many of our fellows are athletic people, and looks like there is a link between quite intence workouts and BFS.as for electircal shock, I think it does not differ too much in therms of overall shocking effect from traffic accident, falling down from bike, giving a birth or moving to another country (which you have too - plus completely different climate and time difference!).From that point of view your symptomes look rather common for BFS, and especially with good results of major tests I would like to say there is no big difference in exact trigger.
 
practically thjose who did not report any physical shock later (when asking or by themselves) explain that they had a viral infection, an emotional stress (or several in line), many people started to have BFS after admission to college, on new job, before or soon after wedding, death of close relative (especially from ALS or cancer), just name it.of course electrical trauma is a huge physical and emotional stress (least mentionen it is badly unpleasant).sometimes even the slightest stress can lead to complete mess. My own BFS started with flu on vacations (we had a guy in the group with running nose and half of tour group was ill therefore), and since that I can not easily move even to my friends for 1000 km, not saying about big foreign trips - I immediately have cramps, flu, tonsillitis, urticaria with some quinke edema (especially horrible fear in the foreing country) etc etc. full set of *beep* :( It is how my body now repeatedly reacts for the initial stressful model situation "out of home = danger of disease", sometimes I laugh on that but sometimes feel very sad and depressed because I love travelling and got the possibility to do that on my own finally and BOOM! BFS spoils everything.So if your physical status was confiremed as good and safe, you just need more time I believe, and one day you'd feel better.
 
yaumno -Pretty fascinating stuff. So it has been only 4 months since you had your electrical accident? Approximately. Yours might just go away with time. You say you started twitching after coming of Xanax? You got the cogwheel before you subjected your body to the barrage of benzos and SSRIs? I have had many Dr's say they can feel the ratcheting when they check for it. Have you had any Dr say they felt it?Just some curiosity questions.MD
 
1) Understand first and foremost that the medical system knows very little about anything pertaining to the brain, nervous system, and the immune system. As such, be aware that there is a whole universe of disorders that have no explanation at this point in time, and we all may fall into that category quite well. 2) Secondly, I still believe something has to "break" in order for anxiety to be related to this. I know plenty of people with anxiety at levels I have never experienced, which haven't had a muscle twitch in their entire lives. Some are on heavy medications just to avoid regular panic attacks. Something I've never had. So there is something unique about this, outside of just anxiety. Maybe your trigger that "broke" whatever is broken, was the electrical shock.3) There is a phenomenon called "Sprouting" after nerves have been fried. I am not saying BFS is sprouting but sprouting manifests a lot like BFS. There's a very remote chance you fried your nerve endings and they're simply regenerating, resulting in the fasciculations and (if applicable) nerve pain sensations. But this is probably not the case.... just interesting to note.4) One doctor who is an expert in Neuromyotonia (the more severe version of what we have, at least symptomwise) believes that BFS is just a mild, nonprogressing form of Neuromyotonia. There have been documented cases of NMT starting after CNS onslaughts like bee stings / venom. For whatever reason, once it starts, it just takes off, and keeps going indefinitely. Mostly because people here do nothing about it. But with the Bee Sting situation, they gave immune suppressants and the person was completely cured. 5) There are situations where external things can cause the sudden production of autoimmune antibodies, to whatever has been introduced to the system. Usually when those antibodies are similar to human tissue cells, the immune system gets confused and begins attacking the human tissues while its trying to clear the invader. In other words, autoimmune reactions can come in 100,000 variations, and therefore it wouldn't be something diagnosable. There's a possibility we all have a trigger that has begun the development of immune responses which are affecting our nervous system. I dno't know if electrical shocks can do this or not, but ... in the end ... the CNS is an electrical system. So ....-Burger-
 
Have you considered trying acupuncture? It is often overlooked and undervalued, but I found it to be incredibly beneficial. I had the racheting muscle sensation you speak of. I would notice it when I would yawn and stretch in the mornings the most. Also the quick back and forth movment when brushing my teeth made it very apparent. Otherwise I could almost try to ignore it through the day. The racheting symptom was one of the first to go when I changed my diet and took out inflammatory foods. Acupuncture was also a critical role in my recovery. I haven't had the racheting movement sensation since 2010, but I remember it well. It was one of the more scary symptoms I had.Although we all have slightly different stories as to how these symptoms just showed up one day, my acupuncturist now had a really good analogy that made a lot of sense to me. He said our bodies are constantly adapting to the stress, toxins, and abuse we subject them to day in and day out. The often adapt to allow us to keep on feeling good, but not all adaptations are for our overall health benefit. He compared the body's tollerance threshold for stress, toxins, and abuse as an empty glass. As we subject it to more and more and it goes on adapting and putting up with everything the glass begins to fill up. One day we reach the point where the water begins to overflow because the tollerance threshold has been reached. We can no longer adapt to feel fine any longer and something has to give. Physical symptoms begin to manifest. We are suddenly aware there is a problem, but the truth is it has been in the works for years. When he works on me, he is working to address the many adaptations that were made and tries to resolve them healthily so that the water level can lower. As inflammation and sources of stress are removed the physical manifestations (symptoms) diminish as well.
 
yaumno -Just for logic sake lets sum up before you jump of the "BFS," Neuromyotonia, other cliff :)You're 24 and lift weights like a normal 24 year old. About 5-6 times a week. You don't abuse alcohol. On March 17th you received 110v through a light socket. You experienced numbness and tingling in your right forearm and hand from the shock. Along with this, you had a great deal of pain running down your arms. Your Dr prescribed vitamin B12, and Prednisolone (were you low on B12?) Are you still on those? You felt anxious about hour health after that. Who wouldn't? You just got shocked. The numbness and tingling went away in two days. That's good. You started to experience "ratcheting" (not cogwheel rigidity) 4 days after the incident. After a week it was occurring all over your body. Was this after the vitamin B12 and the Prednisolone?(Its a good thing you did ratcheting tests on your friends so you have something to go off of. Is yours that much worse than what you found in others?) The Doctors ruled out MND with an ENG, MRI, blood tests, and SEP.You tried a whole slew of Psychoactive drugs. They did not relieve the ratcheting. But after the alprazolam you had some fasciculations that lasted only a couple days. You have never had nor are currently diagnosed with anxiety (other than being "worried" about what's going on with you) or GAD.You have eczema, which you should not read too much into that being involved. Does it show a predisposition to autoimmunity? You don't even know if the ratcheting is autoimmune related. That's a leap. So in the last 4 months since the electric injury you received, you have subjected yourself to a lot of health anxiety (again, who wouldn't), and numerous medications.You still have the ratcheting and pain.You don't have: fasciculations, cramping, buzzing, vibrations, burning, tingling (other than for a couple days), or anything other than pain and ratcheting. Has the pain and ratcheting been getting any better?Are you able to still lift weights and, other than experiencing your symptoms, live a normal life?Just some food for thought before you get going on too many tangents and searches for diseases. MD
 
My initial mention of Neuromyotonia was not to encourage him to start looking at is as a possible diagnosis. It was just to point out that syndromes of malfunctioning neuromuscular nature can come from strange things, like (as mentioned) bee stings. I don't think he has neuromyotonia as his symptoms don't match.
 
Hi Spenser,I am not sure if you have any GAD at all first. But looks like you definitely expreience some after-stress reaction. Because you were asking' how it could be that before I sustained much strogner stresses without it', I told you that stress reaction developes at the same way as other disorders with pretty clear bilolgical background - diabets or thyroid issues for example.changes caused by stress factors in your body could be cumulative and pop up suddenly after relatively moderate trigger.You refer to your young age as a protection from any possible reactions like that, which made me laugh a bit. This site is full of stories from people at 19 to 30 who suddenly, being pretty healty and often athletic, become a real wrecks, felt into obsessions etc. 2/3 of mood disorder manifest at the age between 20 and 30th, in the most fruitful year, and almost all manifestations are acute, and almost always there is a stress trigger behind (with a lot of such or even bigger stressors occured before). So you might be of that type. Or you might not be. I am not your doctor, I just can tell you how it happens in other people in the similar way.I think you may stay on the solid fact that you do not have physical neuronal and muscular damage (as this is proven by neurophysiological tests, as far as I understand) and consider that time would heal you which of course I wish to you from the heart.
 
Hello,first let me tell you that i feel with you and i know how hard times can be, if we fear for our health.I will try to answer some of your questions to charm away some of your worries.The parts of my body, where i was suffering very severe (parkinson-like) from "ratchering" (but not ony from that):Shoulders: if i was lifting up my shoulders, it goes smooth, but when i let them down, the are really ratchering down, in steps, not only unsmooth but completely like a cascade......Lower back: if i stand, maybe in front if a table to washing up my dishes, and had to grap for something...when i let down my lumbar region.....the same very hard ratchering.You have to know, that i do sports for decades bevor, knowing my body very well und my smoothnes where cat-style bevore, i was realy frightened and shocked at this time because my smoothness where totaly gone away..This started suddenly with full force and lastes until it subsided and than went away compledly.In thee days i where in danger to loose everything because the fear take total control over my whole life.You can see all the scary posts from me here (had two names Florian and florian_), my first post was 10 years ago!!:What i can tell you is, that everything is connected with hard stress - mentaly and physical - for me and also for the most of us, if we notice this stress or not.today iam fine but from time to time, it flare up and for some weeks, one morning i get the same old ratchering.....some days later hard twitches in calves and two hotspots on tumb and first finger, and what followed? same old hard fear for two days. I let it go and the ratchering is gone.Stress trigger this stuff and fear fix it and make it worse.First i learned to notice when i get overstressed.Since 3 Years i changed my job, work now as acupuncturist in berlin and see some more cases.I beleave that we are just mor sensitve than others.I am shure what helped me was "relaxing my liver-qi and eleminate internal wind". You could ask an acupuncturist for that syndroms. I know you try it before, but maybe you look for another one.Me helped also to go on, dont mind of all the symptoms, and i had a lot and hard.....i take fish-oil and omega3 for protect the nerves....do sport and try get enaugh sleep....some VitE, Magnesium a.o. stuff.So i can tell you: yes it can go like it come and it can come back and goes away again.....go on with your life. We are just BSF-PeopleIf you have more Questions, i will try my best to answer them, but sorry for my very limited english.Hope that calmes you down a bit.Regards Florian
 
Hello everyone,I wanted to post an update about my condition because it seems to be worsening and I really need some advice.So over the last few months I have been having increasingly powerful and frequent fasciculations. These started a few months after the electrical shock but they have been getting worse and worse since then. What disturbs me the most is that they are especially frequent and intense in my right arm - the one that sustained the shock. This association between the location of the shock and the location of the most intense/frequent fasciculations makes me really worried that the twitching is a direct result of the electrical accident.Further, about 4 months after the shock I began to feel that my right hand was "different," "stiff," or "heavy." This stayed mild for a while but in the last few months and weeks it has gotten more and more pronounced. Right now it is pretty bad - my right hand feels clumsy and weak all of the time. I don't see any visible muscle wasting and I don't have any true objective loss of strength but something is definitely very wrong. When I use my fingers they feel as if they will fail under the pressure I apply to them. However I can still push on the end of my fingertips and hold them up against a lot of force.I am also having very noticeable tingling in my right forearm and my right calf. It is very stable and doesn't come and go under different circumstances. However, I don't have any loss of skin sensation or numbness.Within the last two weeks I have been having really bad muscle cramping in my right calf and right hand and forearm. It occurs pretty consistently and is quite painful. If I stretch of massage the muscle I can get it to go away but it returns quickly. The muscle cramping is especially frightening because it is a new development.I had another EMG test performed 6 months after my electric shock and it returned normal results again. I just can't shake the feeling that my condition is deteriorating and that these symptoms seem an awful lot like the beginnings of MND - something that is documented to have happened following electric shocks.The muscle ratcheting and fine tremors in my hands/fingers have remained constant as well.If you have any thoughts, comments, suggestions, or questions then please let me know. It's been very hard to deal with this while living in a foreign country and I need to talk to someone else for another viewpoint. The doctors know what they're doing, but I just feel like perhaps I should be doing some treatment to try and arrest the progression of this condition.Sincerely,Spencer
 
Spencer, I'm not sure I can offer any great advice beyond what you've already received from the vets here. I can only sympathize, as my symptoms are similar. Last week I marched back to the neuro because the muscle shakiness (physiological tremor?) in my left bicep was really bothering me. I've had pins and needles, burning nerve sensation, numbness (like the feeling you get after you have your blood pressure taken) -- all in that left arm, and for no apparent reason (I didn't sustain an injury or pinch a nerve). On top of that lots of twitching in that arm. My doctor attributes all of it to BFS, and he was really only interested in whether or not I had lost strength in that arm -- and thankfully, I haven't. He could have cared less about the twitching or shaking. But like you, I've been troubled that my arm doesn't seem like it's getting better. My left hand has also *felt* weak, stiff, just plain weird. The doctor suggested a beta blocker, but I tried it once and was so tired from it I couldn't function. And I have a baby and cannot afford to sleep the day away! So I've been ignoring my arm and guess what -- the twitching and odd sensations haven't bothered me that much the last few days. I know you'd like answers, but in truth, this may be one of those situations where your body needs time to heal from whatever trauma your nervous system has undergone. Be grateful -- very grateful -- that you have no weakness. That seems to be the only thing the neurologists really look for. You've had a clean EMG, and that really does rule out anything sinister. I hope you feel better soon.Michele
 
Thanks for the kind words princessshelia. I'm glad to hear that you are noticing your symptoms less. It's really hard when you are experiencing neurological symptoms and no one can give you a clear answer as to whether they are organic or psychological in nature. I know it's not their fault but it does make me slightly angry when neurologists ignore symptoms that are seen as "less serious" even though they are very distressing to the patient.In other news, I wanted to let you guys know that I just got back the results from my MEP (motor evoked potentials) test. There was an abnormality present but the doctors are not quite sure what to make of it. They are pretty sure that I have an upper motor neuron lesion of some sort (affecting the motor neurons in the brain, not the spinal cord), but there is no way to determine the possible prognosis of such a lesion. Basically I just have to wait, keep myself healthy, and hope that the problem is non-progressive or eventually resolves.The actual verbiage from the report is as follows: "The MEP study shows 1) prolonged central conduction time between the left cortex and the right C7 region 2) minimal prolongation of central conduction time between the left cortex and right L5 region. These findings are not incompatible with a lesion above the lower cervical cord region."My symptoms from the shock are on the right side of my body which corresponds to the problems in conduction with the left cortex (because the left brain controls the ride side of the body and vice versa).
 

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