How time flies! Two years ago, almost to the day, and while in the grip of a WebMD-induced panic, I read about this site while reviewing posts on the Cleveland Clinic's neurology forum. A neuro recommended to one of the distraught correspondents that he might find this site of benefit, since it seemed he had BFS, not ALS. From day 1, this site was a source of wisdom and strength and I owe a debt of gratitude to the many members of this forum who walked me through those early days. I have since found my way here far, far, far less frequently, but that doesn't mean that this site is any less valuable or that my BFS symptoms have all gone away. But used properly, for newbies here, this site will become over time more a place to share insights and ideas, not seek refuge from near-paralyzing fear.If you're like me, and still dealing with the fun and excitement of BFS, you have likely gone down this road:1. Bewilderment at the uncontrollable and inexplicable actions of some of your muscles.2. A trip to the internet for enlightenment, only to find misinformation and a bogus "diagnosis" that sets off alarm bells like never before. Twitching ramps up.3. Convinced the end is near, you stumble on to this site. After a short period of time here, you calm down and think how absolutely silly your were acting.4. A day or two (maybe an hour?) passes since you visited this site before you're once again convinced that you're at the outset of a terrible disease--ALS--and you're now a registered user of bfsforum.com, seeking reassurance and guidance. You get plenty, but. . . .5. You make an appointment with your GP. He/she tells you you're just fine, maybe need some stress meds and counseling.6. Convinced your GP is a quack or just too busy to really diagnose you, you manage to get an appointment with a neurologist. EMGs and other tests generally follow; all show there is no ALS (which by now, you can't even type in your posts here). He tells you about BFS and how twitching in and of itself is nothing to worry about. ALS is a disease of weakness, not twitching. Millions and millions of people experience muscle twitching. Some of those suffer from BFS; NONE of it leads to ALS. Relieved, for the moment, you leave feeling a bit silly for being so worried.7. You return here for support and to report the results of your doctor's visit; unfortunately, you read some of the assinine posts of those who are here to make mischief or those who can't shake themselves free of fear. These posts talk about a case in Upper Elbowvia where a 1-in-a-hundred million case of muscle twitching preceded by 2 years the onset of ALS. The writer is clearly hysterical and impervious to the responses of others here. You know that ALS is very rare and you're far, far more likely to die in a car crash. But sadly, you can't get that post out of your mind (and refuse to take your car out of the garage, just in case today's the day).8. Days/weeks pass; still not convinced it's BFS or some other non-life-threatening disorder. One leg looks like it's only one-sixteenth the size of the other. You can't lift sacks of cement over your head with one arm--never could, but no matter--and ask your spouse/significant if your left arm looks smaller than the right. They laugh and turn up the TV. You walk around on your toes and/or heels. When asked, you say you're "limbering up for a run" even though you're still dressed in a business suit. You post more of your perceived symptoms here and the reassuring responses now have a shelf life of 1 minute, 13 seconds. Finally, you seek another neuro appointment, maybe with another doc.9. This doc becomes visibly irritated that an otherwise healthy person is taking up his time and sends you away with a clean set of tests and a request that you "talk to someone about your anxiety." You sprain your ankle walking on your toes while getting off the elevator in the parking garage.10. You settle into a routine, alternating between hope and fear. As time passes, you adjust to the twitches, cramps, boomers, pops and flutters. You sense weakness but now know it's not REAL weakness. If you're lucky, you don't have severe pain and cramping like some here. You may, in fact, have discovered other--real--disorders that can be treated and begin to take seriously the common sense and level-headed advice you find here. You're able to type "ALS" again and even look at a Lou Gehrig baseball card without going weak in the knees or believe it's a sign from the great beyond that your number is up.11. Two years later, you still walk on your toes and heels from time-to-time, though you've stopped doing so while using a urinal 
. While thoughts of the unthinkable (?) still pop in from time to time, you're now a bit embarrassed when you run into your neuro and wonder if he's still steamed at you for that day you insisted he--and his tests--were wrong and that this was more than BFS. But you're smarter and better for it--appreciate life and family more than ever and are determined to make the most of everything that comes your way.12. You realize you really are OK and that you'll never forget all those here on this forum, too numerous to mention, who helped you mentally survive this. I know many of you here have a much more severe case of BFS and its related crap than I do. Because of that, the value of this forum is not just to talk the fearful back off the ledge but is to provide moral support and practical advice to BFS sufferers. My symptoms come and go; my "hypervigilance" is gone. If you're at the start or early in the process of coming to grips with BFS, trust the rational advice and responses you get here; pay no mind to the panic-mongers and other lurkers here to cause trouble. Listen to your doctors and accept both their diagnoses and your test results. Keep your perspective. Don't lose time with family and friends worrying about what you know you DON'T have! Share your thoughts here honestly and openly, even if you feel silly afterwards, but don't keep looking for ways to disprove the sound advice you've been given. And finally, don't forget that BFS itself can be anything from annoying and distracting to painful and debilitating--but not fatal!Thanks to all of you for your time, your humor and your support! You guys saved my sanity and I can never, ever repay you for it. I can only hope my posting here has helped someone, even if only a little bit.All the best,Mark
. While thoughts of the unthinkable (?) still pop in from time to time, you're now a bit embarrassed when you run into your neuro and wonder if he's still steamed at you for that day you insisted he--and his tests--were wrong and that this was more than BFS. But you're smarter and better for it--appreciate life and family more than ever and are determined to make the most of everything that comes your way.12. You realize you really are OK and that you'll never forget all those here on this forum, too numerous to mention, who helped you mentally survive this. I know many of you here have a much more severe case of BFS and its related crap than I do. Because of that, the value of this forum is not just to talk the fearful back off the ledge but is to provide moral support and practical advice to BFS sufferers. My symptoms come and go; my "hypervigilance" is gone. If you're at the start or early in the process of coming to grips with BFS, trust the rational advice and responses you get here; pay no mind to the panic-mongers and other lurkers here to cause trouble. Listen to your doctors and accept both their diagnoses and your test results. Keep your perspective. Don't lose time with family and friends worrying about what you know you DON'T have! Share your thoughts here honestly and openly, even if you feel silly afterwards, but don't keep looking for ways to disprove the sound advice you've been given. And finally, don't forget that BFS itself can be anything from annoying and distracting to painful and debilitating--but not fatal!Thanks to all of you for your time, your humor and your support! You guys saved my sanity and I can never, ever repay you for it. I can only hope my posting here has helped someone, even if only a little bit.All the best,Mark