My brother, that is very concerned about me being on the internet looking for help(sence it was there it all started, when I looked att googel for twitches *** came up and then hell broke loose) Has been looking up bfsforum.com and says that doctors and medicalsites warn people to go to this site because it is alot said about *** that is not true. That make people more worried....
Medical Warnings on BFS.com
- Thread starter coty721
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Hi Swedishgirl--I heard about this site for the first time from a neurologist on the Cleveland Clinic's Neurology Forum. He said it was THE place to learn more about BFS.Now I can't vouch for the veracity or accuracy of everything said here about ALS, but people here share what their own doctors and neurologists tell them and that's an important distinction. Doctors' opinions will vary, of course, but in the main, I've seen a consistency of information here about both BFS and ALS that matches what I've been told by a neurologist and a neurosurgeon. Moreover, BFS in a Nutshell contains inforamtion drawn from other neuology sites and sources. It's also been my experience that if someone here gets too far out on a limb, or says something that is really off the mark, others will jump in to correct it. Are there bits and pieces of information and speculation here that are probably incorrect? Yes; but I've also seen posts here that were unnecessarily alarmist, as well--not just "happy talk." The disclaimer on the site, like all other responsible sites, warns against accepting at face value all information offered on the internet. But the bottom line is this--a neurologist at a first-rate medical facility recommended this site to his own readers and the consistency of the information offered here has stood up to people's own experiences and doctor's visits--including mine. For that matter, WebMd, a reputable site, didn't even mention BFS when I went there last October--but it DID list ALS as the cause of leg twitching. That, as I and all others here now know, is only partially true (and somewhat irresponsible, IMHO).I hope this helps; weigh the info you get here with what your own doctors tell you and I think you'll find this site is generally right on target.Mark
Like swedishgirl i also wonder if everything that's been said here is true. i read reports of EMG where the first year they didn't found anything and later on the person is diagnosed with als, on the forum they say clean emg is no als. also time of twitching, different opinions, but what is the truth now?everybody always says it's bfs, nobody here got als? just wonderingmaarten
I THINK THAT I SEE "INTENTIONAL TORNADIC" ACTIVITY GOING ON RIGHT NOW.....AND I AM CHOOSING TO SHUT THIS COMPUTER DOWN @ THIS POINT..BECAUSE I SEE WHERE THIS IS GOING...... 
DEEDEEI do want to add that my OWN NEURO w/out my lead or mention there of actually asked me if "I KNEW WHAT Benign Fasciculation Syndrome" was....So she braught it up to me. I played dumb the whole time. I didnt want to lead her in any direction. I wanted her to do the exam and then give me what ever diagnosis it was that I was supposed to recieve. Benign is what it was. So I guess here in the states most neuro's are AWARE of BFS.Maybe its not that way in Sweden.
DEEDEEI do want to add that my OWN NEURO w/out my lead or mention there of actually asked me if "I KNEW WHAT Benign Fasciculation Syndrome" was....So she braught it up to me. I played dumb the whole time. I didnt want to lead her in any direction. I wanted her to do the exam and then give me what ever diagnosis it was that I was supposed to recieve. Benign is what it was. So I guess here in the states most neuro's are AWARE of BFS.Maybe its not that way in Sweden.Hey Maarten--I didn't mean to spin you up--you're reading waaaaaay too much into what I said; and that is an even bigger problem, sometimes, on this site. People, myself included, wound up here because we went on the internet, looked up "twitching," and got in one form or another, ALS as the "answer." So what I presented here is hardly breaking news. If it was to you, then I guess I'm surprised that you were already worried about your twitching. BTW--my legs have twitched since last October. I could choose to ignore my doctors and continue to obsess or I could accept their diagnosis and go on; I chose the latter.The problem is, ALS is NOT the answer, if taken in context. Everyone here who has been to a neurologist or other physician, including myself, say that their doctors have said that what concerns them is the company twitches keep--not the twitching itself. Wherever you twitch, how often, how long, etc, etc, does not matter to them unless there are other signs such as CLINICAL weakness (can't pick things up, can't stand on toes, etc) and/or wasting muscles. Likewise, countless people here, including myself, have been told that after a relatively short time with twitching you'd have other obvious symptoms if it was ALS. An EMG can detect "markers" and other signs of ALS even in asymptomatic limbs. If it's clean, no ALS. Now, if someone had a clean EMG and went on to develop ALS, that's no more remarkable than someone getting a clean lung x-ray and then going on to develop lung cancer. These things happen, but they are NOT related.The moderators here can tell you that no one here has developed ALS after receiving a clean diagnosis and EMG. Moreover, clinical studies show that there is NO causal link between BFS and ALS. My doctor has told me that I have BFS; twitches that are widespread, come and go, wax and wane are NOT, according to him, due to ALS. He told me on every visit where we discussed this that they look first and foremost for weakness. They do an EMG if the clinical exam reveals true weakness OR to give the patient some peace of mind. My even refused to do an EMG on my legs during my second visit. He was adamant that I didn't need it.So, you can listen to your fears and imagine the worst possible scenario out of every scrap of information. Or, you can listen to people who have been going through this for awhile and come here to share information and relay what their DOCTORS have said. Or, you can make an appointment with a neurologist, if you haven't already, and accept the clean diagnosis. Don't go onto other sites and don't selectively pick your information. You'll be trapped in an endless cycle.But back to the main point--this site is invaluable and worthwhile. If my doctors had told me things at variance with what i have read here, I still wouldn't be here.But I apologize for getting you--or anyone else--upset.Mark
First of all; Great post NinaC2005- I really freakt out about that Marteen said about the emg.Lovely: I didn´t meen that there is nothing callaed BFS, I just think its sad that my doctors didn´t say anything about it. I really wish that I have BFS, thats why Im here, to find people with the same weird symtoms as myself that has been diagnosed with Bfs. This will sound weird but sometimes I really hopes for ms because Im so scared it is ***. My brother was talking about people like meself that is so afriad of ***, has been to the doctor then visit this site and find out more to worry about. I think one post was saying that *** starts in shoulderblade and thighs and that was as I recall not true. I don´t know anymore what is true or not, I also read that *** starts in hand and feets, face or inside of thighs. And I dont know it that is true or not. But it really scares me sence I have twitches in all dose places...
4evaGirl-Hi again. Have you been to a doctor? If so, and the diagnosis was good, it doesn't matter after that--you're OK!According to my neurologist--not my opinion--and that of many others here, the twitching you describe as being in "all those places" is an indication that it is indeed benign. *** twitches don't in my doctor's words, "act like that." Plus, if you had widespread twitching and it was ***, you'd have other very noticebale symptoms by now. My doctor told me that as well.I hope you're feeling better; it does sound very much like BFS to me.Best regards,Mark
MatkC: Thank you agian. I hope you are right. Can I marry you? 
I have been to the doc, but she didn´t see any of my twitches and I haven´t had an emg. My doc didnt wnt to do anymore tests. She looked at my muscles, reflexes and strenght and so on. But Im afraid becasue I didn´t know that pain and buzzing also was a sign of *** so I didn´t say anything about that to her. So Im a bit concerned...
I have been to the doc, but she didn´t see any of my twitches and I haven´t had an emg. My doc didnt wnt to do anymore tests. She looked at my muscles, reflexes and strenght and so on. But Im afraid becasue I didn´t know that pain and buzzing also was a sign of *** so I didn´t say anything about that to her. So Im a bit concerned...Hi again! I'll bring the champagne! 
) Actually, from what my doctor told me--again, not my opinion--pain is NOT a sign of ALS. Sensory signs in general are not indicative of it, either. He told me this while doing an EMG on my arms; it turned out that I had carpal tunnel. That was causing the pain.Also, I and dozens and dozens of people here have buzzing as well. My neurosurgeon says that's a sign of possible nerve irritation, but not the bad stuff.I can see why you're confused--you've obviously gotten that information elsewhere and now here I am (and if you check other posts here, you'll see what I'm saying repeated many. many times) telling you something else. But I stress that these are not merely my thoughts or opinions but what a very experienced neurologist told me.I hope this helps.Mark
) Actually, from what my doctor told me--again, not my opinion--pain is NOT a sign of ALS. Sensory signs in general are not indicative of it, either. He told me this while doing an EMG on my arms; it turned out that I had carpal tunnel. That was causing the pain.Also, I and dozens and dozens of people here have buzzing as well. My neurosurgeon says that's a sign of possible nerve irritation, but not the bad stuff.I can see why you're confused--you've obviously gotten that information elsewhere and now here I am (and if you check other posts here, you'll see what I'm saying repeated many. many times) telling you something else. But I stress that these are not merely my thoughts or opinions but what a very experienced neurologist told me.I hope this helps.MarkI want to apologize swedishgirl......I just get tired of this battle...and BFS is a harmless battle with many of many mind tricks. If it makes you feel better- My Neuro was the "Cheif of Neurophysiology" and did NOT do a EMG on me. She said w/ my clinical being excellent, reflexes symmetric, and as it happened to you (couldnt even get a twitch to appear in the exam room) that I didnt need a EMG but she would perform one for my own peace of mind.Listen to MARKC. He knows a lot and he see's a neurologist quite frequently. I know its tough- esp at the beginning and even at my almost 5 month mark its tough- but the MORE you think of those little twitches and get anxious the MORE they appear. You have to block out these TID BITS that come from here and there from "THOSE SITES" that people are grabbing at. I watched a 20/20 special a few months ago and it said PEOPLE were FLOODING neurology office and Cancer offices due to self diagnosing over the internet. That people are literally coming in w /stacks of papers..with their WILLS , demanding tests after tests after tests from doctors when doctors are not seeing it fit....This was a neurologist speaking..She said it was OVERWHELMING and the reason why people are WAITING months and weeks to see a neuro was bc of this. My doctors told me a loooong time ago when this first started TO STAY OFF THE INTERNET PERIOD and listen to their orders and dont try to trump them. I wish I had of listen. Now I have a bunch of garbage in my HEAD. Unlike a computer I cant just empty the trash bin and start over.... lolI had this 18 months ago..actually more than that now...and it went away- I never panicked about it b/c I didnt google and guess what it went away on its on. This time I googled and BOOOOOOOOOOOM, HYSTERICS. Please listen to your brother- because he is right when it comes to a lot of "other sites"...but this site is full of neuro visit posts etc. that I have found sooo very reassuring and very consistent with what my OWN neurologist said. 
I wouldn't be on here if I thought for one second these people were misleading me.For information: ALS starts distally, hands, feet...then works it way up.... or Bulbar (mouth region). Thats why, I dont know if your neuro did, but my Neuro looked at my hands and feet and said "nice and plump"...no atrophy no weakness. She didnt examine my shoulder blades or my thighs...she may have glanced at them when she was banging around on me w/ that little hammer trying to get fasics appear but she didnt study to hard at the skin and muscle..Infact on my sheet were it hasStrengthMuscleTone Its all marked Excelllent...Hope I helped.
I wouldn't be on here if I thought for one second these people were misleading me.For information: ALS starts distally, hands, feet...then works it way up.... or Bulbar (mouth region). Thats why, I dont know if your neuro did, but my Neuro looked at my hands and feet and said "nice and plump"...no atrophy no weakness. She didnt examine my shoulder blades or my thighs...she may have glanced at them when she was banging around on me w/ that little hammer trying to get fasics appear but she didnt study to hard at the skin and muscle..Infact on my sheet were it hasStrengthMuscleTone Its all marked Excelllent...Hope I helped.ValgerAce59
Well-known member
There's alot of talk on this thread of things being "true', or "untrue", and it's not quite as black and white as that. Of course, common sense tells all of us that als, or any other disease doesn't show up exactly the same in ANY two people. There are varying degrees of different symptoms, different interpretations of symptoms, different ways of communicating symptoms to the doctors, etc. Just look at a situation such as childbirth. The pain should be exactly the same, wouldn't you think, or at least much the same throughout the population? Then why do stories differ so much? Everyone has a different threshold for pain, and everyone interprets their symptoms differently. I know for a fact that things that I get would be completley overlooked by my husband, for example, if he were to experience them himself. He probably would hardly notice. I think that is part of the key of what we are all experiencing here, is a 'hypervigilance' towards our symptoms, as my neurologist described it. It's curious that alot of us have struggled with health issues way before the twitching started. I have had alot of different symptoms in the past, such as heart palpitations, anxiety attacks, and many other things. Not that this protects me from having any serious disease, but suddenly having the twitching and other symptoms that go along with it certainly fit into my profile. So, on this board, we share information that our doctors tell us, which is completly invaluable and helps us immeasurably, especially when we are going through something that is shaking us to our core. I, for one, have never had anything that scared me so much as this. Each day, I find myself with a new struggle it seems. So, I come on here, get help from others who may have experienced the same symptom, and find out what their doctors said about it. It's almost like going to the doctors ourselves, in a way. But, there are so many variables, as I mentioned before. So, it's not about something being true or untrue, it's about common sense, trying to evalutate our symptoms, and making the best judgement for ourselves. I've learned on this board that als presents itself in an obvious way. If it weren't for this board, I would have worried myself sick to the point of not being able to care for my family on a day to day basis, over symptoms that I now realize were trival, but at the time seemed life-changing. I was in a panic when I first got tongue-twitching, for example, and now I've been experiencing that for about a year, and felt very comforted to know that others on here have had that, and they don't have als. So, it's just common sense, of course life is not like a script we all have that we are following exactly, there are many differences between everybody. You could go to 10 different doctors with the exact same symptoms, and have 10 different answers. But, generally, this board provides sound advice and comfort for those that are open minded enough to know that they still have to pay attention to what is going on with them personally, but use the information on here to their advantage. There is certainly nothing wrong with people coming on here to get comfort, you can't go through life thinking that you have something seriously wrong with you all the time, and this board has helped me come to terms with that, but I'm still learning. I mentioned a book recently on here that someone had mentioned to me, I forget who wrote it, but I think it's called "Start Living', and the doctor who wrote the book tells how about 90% of our worries turn out to be nothing. Imagine all that wasted time!! Sorry to go on and on here, I'm just trying to explain myself. I can't tell you how many times I had something really important to go to with my family, and had a symptom that was ruining it for me, then I came on here, and got responses that made me able to go out and have fun with my family. Now, that is PRICELESS!!!! I can't think of anything more priceless than peace of mind, if only for a little while. We all know when something is really going wrong with us, and I'm sure those types of symptoms will send most of us into the doctor. For those times in between, we have each other. Thank God for that! Good luck, Val
Lovely: No need to apologize! Great post Val. I have had alot of terrible symptoms and some people have taking there time and explained that they have had the same. And its like you said priceless! This people is like we say in Swedish "guld värd", the are saints! Explaining the same thing over and over again.