Eliminating Causes of Symptoms

I feel the need to weigh in on this subject a bit. First let me say that I don't believe that anxiety caused MY bfs, but I don't discount the effects that chronic anxiety and extensive adrenaline can have on our bodies. In the end, anxiety and its effects on the body can wreak havoc on our system......but, after years of bfs, dealing with stress and anxiety haven't cured my bfs. As for the cancer relationship to bfs, if one actually exists, it is extremely rare. I have seen one study, years ago (i haven't looked for years) that linked fascics to lung cancer. Worried about that because both of my parents had lung cancer, I took the study to my pulmonary doctor and asked him to review it. He was shocked to read the study and told me that he dealt with lung cancer every day and had NEVER seen twitching as a sx. I have been at this for years and I have never, not once, seen a case of cancer causing fascics on this board. So while anything is possible, cancer causing you fascics appears to be a very, very rare possibility. Definitely not any reason to panic about, and if you are worried about it simply ask your doctor. If they are anything like mine, he/she will probably laugh and rx a good anxiety drug...........which controling anxiety is in my opinion the first step everyone here should take in dealing with bfs. Once the anxiety is under control, people can take an objective approach to their health care/treatment for bfs. Finally let me say that I 100% support people that want to take a more proactice approach to finding a solution to their bfs. If a person has the want and desire to search for answers, why shouldn't they? I've been there, and found no good answers to cure my bfs, but why should anyone be discouraged from looking for answers? I would just suggest that we don't discount anyone else's ideas/thoughts on the subject.Take care,Gary

The problem with the BFS diagnosis is that it doesn't feel like a real diagnosis. To me it's just a lame name for something that nobody knows why if happens. I'm not sure about Isac syndrome ( since I don't google diseases) but it does sound like a properly "named" syndrome I have to say that the advise to wait and relax is probably good for new members with high anxiety. However, what do you do after one year? Two years? Four years? People can adjust to everything and that's why many of us can live their lives normally. But the truth is that I still have same symptoms as in year one, the only difference is that now I don't overreact. In my head I have a memory of that "twitch". It looks like with time we are agreeing on doing nothing. Secretagent on the other hand didn't do nothing, quite opposite. Thus, burger you and him are quite similar in your actions.

Also Chrisii I sense that you took too much on yourself. It seems like your are emotionally overwhelmd with all these requests from people. You are a great help to everybody on this forum but I'm afraid you can't "save" everyone. I do believe that majority of questions asked are already answered, just use search option people!!

I actually do this a lot if you read my later posts, sending people to the search function because there's no sense in answering the 100 millionth twitch question. It is also not even important to discuss different views on the possible origins of BFS , as long as people understand it is benign. But apparently to many people on this board, cancer fears are a big big issue, and they were very concerned. In this case I try to answer, because the least thing people pn this board need is one more thing that causes them anxiety.

I guess this is what I'm trying to say, in summary:If youre going to get medical tests to rule something out, focus on something more likely like Potassium Channel Disorders, or even generalized low-grade Autoimmunity. Rather than wasting time on ALS fears, it would make much more sense if everyone here got a VGKC Antibody test, and sought out neurologists familiar with potassium channel dysfunctions.This isn't about scaring people about cancer. This is about properly identifying symptoms, and getting the work up that best applies to our situation. The advanced medical teams like Mayo Clinic run the VGKC Antibody test and a full paraneoplastic workup on BFSers. That's where we should be focusing our time and efforts. At least for those who do wish to be thorough. That's all I am saying. -B-

I'm fairly new here (and about 6-7 months into my BFS life), and I only occasionally read messages in this forum. I think it's very valuable to read what experiences people have been through, and what kind of things help or aggravate their symptoms. TwitchBFS's post is very interesting in that regard. My impression is, however, that people on this forum react against the way some of these messages are being delivered, and not so much the facts and theories contained in them. I gather that people have tried to convey just that, with relatively little success.BFS is name given to a cluster of symptoms appearing on the peripheral nerve hyperexcitability scale. So is neuromyotonia. The latter term is typically used when the symptoms are more severe. So yes, BFS is a kind of neuromyotonia. I see no need to argue about that, and I'm not under the impression that people on this forum strongly oppose to that classification. But this changes nothing. What we know about BFS doesn't seem to differ from what we know about neuromyotonia: It's probably an autoimmune disease, possibly attacking the potassium channels. Whether we call it this or that is a name game.So yes, neuromyotonia may be paraneoplastic, but it's rare. The thing is, cancer is such a diverse group of diseases that virtually any symptom could be a symptom of cancer. Cancer is, however, usually asymptomatic at first. Worrying about BFS being caused by cancer is about as useful as worrying about toothache being cancer. Doctors can't do full body scans on patients with any symptom that could be cancer. BFS falls into that category.The reason why many newbies on this forum fear ALS is not because they want to fear it, it's because the characteristic symptoms of BFS are also characteristic symptoms of ALS (fasciculations, muscle cramps, (perceived) muscle weakness). Given the number of people with BFS who fear ALS, it's indeed very useful for people on this forum to inform them about why they do not have ALS. It is not a waste of time. And neurologists don't (or shouldn't) laugh at us if we worry about it. I didn't even remotely consider ALS when I was referred to a neurologist. My presenting symptom was sudden onset of paresthesia, so my (and my doctor's) concern was multiple sclerosis or Guillain-Barré. By the time I got to see two neurologists and had started developing fasciculations and perceived muscle weakness, they were the ones who did all the typical tests for ALS. It's not stupid. ALS should always be ruled out first when coming up with BFS symptoms.Finally, as people have pointed out, please keep in mind that BFS is multifaceted. The patient demographics is all over the place, our symptoms are, and our histories are. Sure, if you're a 70 year-old heavy smoker who develops neuromyotonia, speculating about lung cancer is not far-fetched. But if you, like me, are a young healthy man with no cancer in the family and you developed BFS immediately after a serious viral infection, then the likelihood that your BFS is caused by cancer is zilch.

I'm doing a 30-day Paleo challenge atm and I'm 2 weeks in. Until about 3 days ago I felt great, although eating out was quite difficult and had a few cheat moments, both the intentional and unintentional, where I looked at a food label afterwards and discovered a non-Paleo food item like soy. But for the past few days I've been so grumpy, miserable and have crazy sweet cravings and bacne like never before in my life. I was hoping to get rid of my hormonal acne (chin and back), but it only seems worse. Since a few days I'm also getting my somewhat chronic tonsillitis back, which had been gone for almost 2 months. I'm hoping this is some kind of delayed detox, but I really thought I would feel better 2 weeks of 90% Paleo. For those who have tried this; when did you start feeling better?Cheers,Wendy

Everyone has different trigger foods so listen to your body. The foods BFSB described are some very highly likely trigger foods (and aspartame is just plain toxic), but there may be more. Although potatoes are a good source of carbs, they are also a nightshade. Nightshade variety vegetables are unfortunately also potentially inflammatory foods, so don't ignore them or automatically assume they are OK for you to eat too. Nightshades have a tendency to be a problem food, as they were for me in the beginning as well. They are OK for me to eat now, but you need to eliminate the inflammation in order to heal first.

Right this is true. I thrive on potatoes. Others may not.NOTHING is black and white with BFS ..... and almost nobody has the same symptoms ... and we all likely have varied *causes* too.BFS is not one specific thing, and handling it isn't done only one specific way.

Wendy - I also have been eating Paleo style to try to get some reliefs from my symptoms. I know from past experience that these low carb diets can make you feel like crap. They call it the Low Carb Flu and it is not fun. I battled through it back in the day when I went on the South Beach Phase 1. You can get: fatigue, headaches, irritability (like everyone makes you want to snap), your mind gets tired, and you just feel like crap. You basically turn into a Zombie - at least I did. You literally will have Brad Pitt chasing you around with a shotgun. I got down to about 7% body fat on that one, but never again. You also lose a ton of water weight and, at least for me, a lot of salt and other electrolytes. Your body starts to go into ketosis (where it makes ketone from fat) instead of running off of carbs. I personal can't handle it. I guess some can. I think, even Robb Wolf in his book "The Paleo Solution" says some people can't handle it and need to eat more carbs. Give the Mashed potato thing a try, like Burger said. But like SAM said, it is a nightshade and that can be inflammatory, from what I have read. I personally go for grapes and bananas and if I am really craving sugar, like about to go on a cupcake bender, I eat a bunch of raisins. This may or may not work for you. Oh, also, sweet potatoes. Those are not related to potatoes and not in the nightshade family so you can give them a try.

OK, so I am going to throw this out there for open minded individuals to try. It can be a little overwhelming when you start to look into the foods you are eating and trying to find your trigger foods. I know I was overwhelmed. I was exposed early on however to applied kinesiology which turned out to be of great value in determining which foods were good for me and which foods were not. Newcomers to the concept can easily look at applied kinesiology and comfortably jump to the conclusion that it is quackery but please bear with me and keep an open mind. Remember that having an open mind does not mean that you have to believe everything you see, hear, or read. It simply means that you never discount a possibility no matter how much you disagree with it. After all, nobody knows everything about everything.First a little background. Applied kinesiology is based on the concept that you have an energy field surrounding your body, which is interfaced with your body through your central nervous system. The Chinese call this energy Chi, but you can call it whatever you like. This energy flows through your body in multiple complex pathways mapped out by the acupuncture system. Although this energy is invisible the acupuncture system was developed and utilized based on people being able to feel it. Only now, thousands of years later, do we have modern electronic methods of detecting acupuncture points. The electronic measurement of these points throughout the body maps perfectly back to the acupuncture diagrams that have been around for thousands of years. Please consider this interesting correlation if you still doubt the realness of this energy.So, considering the potential existence of this energy field, what implications does this have and how does it tie in to foods and diet? Well, the energy field is very much a part of us and it extends outward into our immediate environment. When you hold a food item that is inflammatory, toxic, or allergic for you the energy field around you recognizes this. Because your energy field interfaces through your nervous system it sends subtle signals that your nervous system responds to. Many practitioners of applied kinesiology utilize a technique called muscle response testing as one method of reading the energy in response to a substance. An unhealthy substance will cause your muscle strength to go slightly weaker. A healthy food substance will allow you to remain strong. Practitioners usually have you hold an arm out while they gently push down and have you resist. I was amazed when despite my best efforts some substances would cause me to go slightly weaker than others.Muscle response testing is not the only way to measure the response of your energy system though. There are multiple tells. If anyone is familiar with a polygraph (lie detector test) there are multiple physiological responses they look for to indicate a binary yes or no response. Despite the conscious mind's best efforts to lie, the energy system attempts to respond truthfully. The pupils in the eyes and the pours on your skin will contract or dilate. Conductivity rates of the skin will change. Vibration rates of the nervous system itself and your muscles will slightly change (phenomenon that makes pendulum dowsing possible). There are multiple things to look for. Alternative medicine practitioners learned quite some time ago that the subtle energy system of the body responded intelligently to more than just things that the conscious mind was aware of. It seemed to respond to things the unconscious part of the mind was aware of too. This is the part of the mind that knows what foods trigger an immune response, if you have a virus or bacteria invader, or how to manage any number of health issues that are going on behind the scenes. A skilled practitioner can use this skill to get to the true root cause for a multitude of chronic health issues where modern medicine doctors can only guess based on learned experience from a history of cases. Unfortunately their *beep* usually results in prescribing some drug that more often than not just masks and in some cases even adds to the burden the body already has. Applied kinesiology is not without its challenges. When you ask a question you will always get a yes or no answer. Unfortunately there is a common issue, especially in our world today, called cross-talk. Cross-talk occurs when the energy system of the body cannot communicate clearly with the nervous system. Cross-talk is still little understood by the wider community utilizing applied kinesiology and is a source of error in many of the case studies that claim to debunk applied kinesiology. A skilled practitioner who knows how to look out for cross-talk and eliminate the causes can utilize applied kinesiology for incredibly high accuracy rates. For the beginner or untrained it can be a great source of frustration. Some common and easily eliminated sources of cross-talk are as follows:1. Remove all cell phones, electronic devices, metal (keys, change), jewlrey (especially crystals, stones, or glass) from your person.2. Keep hands and legs uncrossed3. Maintain a good posture with your head straight4. Stay well hydrated5. Don't sit or stand too close to a source of electromagnetic energyAnd now finally how to put all of this to use... There will be a learning curve, especially at first since your energy system is completely used to being ignored. At first you may want to start out using a pendulum. All you really need is a weight on a chain, like a necklace. You can hold the pendulum by the chain in one hand and a food item in the other. Hold the pendulum directly over the food item and ask internally if this food is healthy for you to consume. Try to hold the pendulum as still as you consciously can. The subtle vibrations of your nervous system should resonate in a frequency that will cause the pendulum to swing. Generally if it swings to and fro towards you then away from you this would indicate a 'yes' response. Likewise a swing from side to side will indicate a 'no' response. You will likely have difficulty getting a response at first. Just keep asking the question and if nothing happens ask for a stronger response. The more you practice the stronger the responses will get. This technique is usually called dowsing or divining, but it is very much the same principle behind the scenes that allows practitioners to feel a weak muscle or a strong muscle response. It is your energy interfaced through your nervous system giving a subtle tell in response to a yes or no question. Eventually when you get more practiced you can learn to recognize the feeling of the energy without the need for an external instrument to magnify the response. That is essentially what a pendulum does. It magnifies the subtle frequency your hand and muscles are vibrating at causing an exaggerated motion through a weight at the end of a chain. When you learn to feel the response of the energy, much as the Chinese learned to feel the energy in the acupuncture points, you will not need anything but yourself to determine if a food is good for you or not. How you choose to relate to your energy is up to you. Some people learn to simply play 'red light, green light' in their heads to get yes or no responses. It can be quite fun.So, that all being said, I know this is a foreign concept to most people here. Some will write this off immediately while others might humor the concept or be intrigued. I am thankful that I humored it back when I was first exposed to it because it is part of what lead me down the path I am on now. I would not be in the great state of health that I am in today if not for practitioners who where very skilled and trained in techniques that utilize this relationship we have with our energy. If you seriously pursue this you will get validation that there is more to this than just chance, but you will make mistakes along the way. Just do your best to learn from them and move on. It is my hope that at least some of you can utilize this to help you to find the foods that you should or should not be eating. Thank you for reading.

i regard myself as cured and 98 % fascicsfree for a year now. my concept is based on exact the same three points. just had a separation, was bad and no sleep, the fascics did not come back.

I'm almost done with my 30-day Paleo challenge now and I've decided to keep at least all glutinous grains out of my life and at least 80% of all other grains. I might introduce a bit of organic Greek yoghurt back into my diet, but milk and cheese stay out, as well as soy and processed foods. The low-carb flu was brutal indeed, mostly for my mood. I wanted to snap at everyone, felt really depressed and had mad carb cravings. But that was over after week 2 and it's been pretty smooth sailing after that. I'm a convert!I feel good, I sleep better and although I still get BFS symptoms and the occasional hormonal pimple, I'm convinced that if I give things a little more time, even that will improve. In any case, I've done enough research (plenty, trust me) to believe that this is an important investment in my future health... No matter how my friends ridicule me Also, I dropped a bit of weight that I had gained because of my thyroid issues (auto-immune, another reason to ditch the gluten!) and am now at my ideal weight again. Thanks guys for the tips and for sharing your experiences. This BFS thing is a strange and fascinating journey Cheers from a very rainy Perth,Wendy

Another success story! Thank you for sharing Wendy! If you experienced flu like symptoms initially it was likely the die off of the excessive candida in your digestive system. It gets out of control with all of the sugar and grains in our diet that feed it. A probiotic supplement would be much more beneficial than yogurt to bring balance back to your system, but I'd wait until you've been off the sugar for a little while longer. Also, a supplement like Lauricitin or Interfase Plus will help you to eliminate the excess candida quicker. When you get the candida under control and repopulate your digestive system with pro-biotics your intestine lining will heal and you can try experimenting with adding some foods back in (in moderation of course). I never went back to my old diet of eating processed foods and junk, but I can now afford to not be so strict with my diet anymore because my digestive system is back in optimal shape. I just don't abuse it like I used to. I eat much more healthy and keep things in balance. Keep up the good work!

Sorry to "renew" an older thread. But, I'm completely on board with TwitchBFS. My first symptom was not twitching... it was numbness. My right pinky and ring finger just went out on me one day while sitting at work. I was hard and heavy into working out and thought I trapped my ulnar nerve. I went and saw an orthopedic doctor. Since I had no loss of strength he felt it was just something transient. Then, the same elbow started aching really bad. I also started to twitch on and off in those fingers and elbow area. Then the problem shifted to my left hand (no twitching). I also started to notice a thick skinned feeling on my thumbs and index fingers. I would wake up at night with my pinky and ring fingers completely asleep. I was so perplexed... how could I develop ulnar and median nerve issues together so fast!? I was constantly applying ice packs on my elbows, sleeping with arm splints, etc. I went back to the same orthopedic doctor and again, since I had no loss of strength he felt it was nothing to worry about. Then, a few months later my left shin went numb on me. Lasted about two weeks. No weakness. Just felt a little weird walking. I was constantly internet searching for causes, reasons, treatment, etc. I was freaking out because I had been so healthy all my life. Over time, my ulnar related issues almost completely went away by just keeping my arms straight. I still had a ton of stress in my life (first baby on the way, government furlough). BAM... calf twitching while laying in bed. I will never forget the moment. My anxiety was the highest it has ever been in my life and all my symptoms went full blown. Jello legs, face numbness, eye pain, wicked fatigue, balance issues, light dizziness, hip pain. I bought 4 books on MS... I was convinced I had MS. I even remember the Barnes and Noble lady asking me if I wanted a gift receipt for all my MS books... I said it unfortunately wasn't for someone else. I finally got to a neurologist. She wasn't concerned as I passed a neurological exam. Still, she ordered bloodwork and a brain MRI. My brain MRI came back fine. My B6 was 4 times the upper limit. I was taking a lot of supplements while working out. I'm convinced B6 messes with us. I don't know if we process it improperly or what. Here's why I believe in a comprehensive lifestyle change covering diet, stress, and exercise. Most of my research was MS focused, since that's what I thought I had. Anyone that has been successful managing that serious autoimmune disorder drastically changed their diet. Look up Swank, McDougall, and Paleo diets. The goal is to reduce inflammation. I’m convinced we are what we eat. I changed my diet rather swiftly to McDougall. I cut out the B6 supplements. I even avoided B6 in foods. I noticed a lot of my nerve issues got better… SLOWLY. No more balance issues. No dizziness. Reduced fatigue. Overall improved health. I was sleeping better. Better digestion. The one thing I haven’t been able to overcome is fear and anxiety. While my symptoms got better, I was still concerned my neuro wasn’t as comprehensive as she should have been. Why not a spine MRI? Why no contrast? Why no EMG? And you know what… my penchant for getting on Google and looking up symptoms has really come back to bite me. Throughout all of this mess, I never came across &LS or even BFS. But then, I found these forums, but also the &LS forums. I started to question my strength. Do I have clinical weakness? Is it just bad fatigue? I now find myself doing strength checks MULTIPLE times a day. I’m always pinching my fingers together. I'm always clinching my fists. I’m always rotating my wrists. I’m always picking things up just to prove to myself I can. Guess what? My symptoms are worse than ever. Body wide twitching… no muscle exceptions. Each morning I wake up and all four limbs feel SO tired. My hands are stiff and achy. Random shooting pains in my fingers and toes. My right pinky started to go out on me again. My forearms ache. I’m constantly walking on my tip-toes and my heels to make sure I don’t have foot drop. Well wouldn’t you know it… now those areas feel weak and I get tingling in my left leg with just about every step. My twitches are almost directly related to my stress level. When I first wake up… nothing… as I lay in bed pondering my symptoms and how I feel… things start firing. My calves, then some place in my arm. My temple. My eyelid. If I drop a Klonopin… reduced twitching. Bottom line… all my sensory symptoms and transient on / off symptom nature should tell me this isn’t anything serious. MS doesn’t do that &LS doesn’t do that. I don’t have good days and bad days. I have good hours and bad hours. All days are pretty mediocre. Lol… Still… I can’t get it into my thick head that 6 months into this, I would’ve already developed some obvious clinical weakness if I had the three star ***. If I had MS, I wouldn’t have numbness come and go so fast. I don’t have any digestion problems. No increased urination. No eye issues. No stuttering. My gut is finally starting to tell me to chill out… it’s got to be in the benign NMT / PNH / BFS / CFS world. Still, that shred of doubt enters back in when something changes. Like Burger, I just need that EMG.Back to my point. If others are successful at treating MS with dieting, supplements, exercise, then I think we should look into a similar course of action as our nerves are overactive. Anything that inflames our gut will inflame our nerves. Over-exercising creates stress on our bodies. Stress toxins and horrible. So many of us get caught in the nasty circular anxiety.It’s not easy. Results show up slowly. But, be persistent. Give it time. I just know that when I was doing a good job eating right, reducing stress, and staying off the internet, my symptoms were better.

I think the last few sentences from your neuro summed it up for a lot of us... Relax man... enjoy life... you have a lot to look forward to. This is our strategy to overcoming and managing this "syndrome." Even today (and quite frankly the last few weeks), I've had this nagging numbness / tingling in various areas in my left leg. It started around my ankles, then moved to the front of my shin, then the back of my calves... now when I walk I get this tingle up and down my entire leg. But, it's not always there. It's kinda positional or if I walk a certain way. But, I've come to the "screw it" mentality. I went running with my dog yesterday for a good half mile despite the feeling, so if I had a serious problem there would be no way I could do that.

TwitchBFS - Couple quick questions:1) Do you still believe the supplement list you provided is crucial? I bought all you recommended, except the B complex without B6. I do have a methyl B12 (5,000mcg). During my first round of bloodwork, my B6 was 4 times the upper limit. So, I've avoided B6 as much as possible. I haven't started the supplement list you provided as I had to stay off vitamins for my 6th round of bloodwork drawn yesterday. When I start the supplements, should I introduce one at a time and see how I do for a few weeks or just start taking everything?2) Have you done much research regarding copper? My fifth round of bloodwork showed my B6 was back in range, but my copper was low (still in range). I saw a few posts from folks noting that copper provided improvement. I came across an article documenting copper treatment in various neuropathies - 3) Regarding Gatorade - I gave it a shot and noticed a reduction in twitching. Do you think something like V8 would be a better alternative sugar wise? It's loaded with potassium.I think that's it for now. I'm well down the road of following a paleo diet, light exercise, sea salt baths. The anxiety comes and goes with each new test my neuro orders. I've had clear brain MRI, nerve conduction study, and EMG. But, this latest round of bloodwork has her looking at Hepatitis B / C, HIV... all sorts of scary stuff. I figured if I had anything like that I would feel SICK! But, overall my health has been outstanding. Just BFS symptoms galore. Thanks.

Wow...I don't know if I could do this! O_O Props to you, though! There is so much I would have to cut out, and I'm also a college student who barely has time or money for anything else anymore, and I already know I don't get enough rest. But, alas...anyone who has experienced college will know what I'm talking about.