BFS: Is Twitching Alone Enough?

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ionyZarrion

Well-known member
Let me be absolutely clear here,I have been having a running argument with Robynn over the last 6 months or so about what constitutes bfs.I became angry when it was described as "lucky" when someone suffers more from twitches than anything else, this uspsets me. It was described in an earlier post that people who suffer from twitches alone do not have bfs. This information is incorrect. Twitches are what bfs is all about.Now I have no problem with people pretending to have bfs...but when these people try to change the very nature of something that I have to deal with everyday to suit their symptoms, describing me as "lucky" that I don't have "clonus" or increased sneezing.. it becomes a very large issue for me.I twitch 10s of thousands of times a day....I have shown u posts where people claim to twitch 5 or 10 times a day.Can you really not understand why I would be annoyed that someone who twitches this much describes someone who complains of twitching as "lucky"?I have also been accused in the last few days of being an alcoholic,a low life, a bully, a baby, warped, an attention seeker amongst many other things. I have 200 posts on this board 185 of them have been in response to other peoples problems. I have never once "freaked out" or cried out for notice like other people who actually are attention seekers and do not suffer from any twitches.I don't have a personal vendetta, I am not a bully, I am not warped nor am I an alcoholic and there is one other thing I am definately not and that is a coward. I will stand up for what I believe is right against all of your insults and mocking youtube videos if I have to.Helping people is a beautiful, godly thing but the intentions behind the help and advice define the recovery. Everyone who ever asked me for advice I have told them to get offline,to wise up and suck it up...When the helper is fundamentally tied to the person they are helping for emotional nourishment both the helper and more importantly the poor person they are helping are in grave danger.Everything I do because I do for this board. If I dont pm all of you on your first day its because I really want you to get better and to move on NOT because I have an emotional need to define myself as someone who helps. That is sick and That is wrong.Somewhere out there are all the people that I have helped in long letters and responses, I hope that they are not around because I have helped them in some small way to recover.Darragh
 
Darr,Stay strong and don't let petty online comments of others get you down. I've had my fair share of people denigrating me for posting what I believe in. If you let what others think of you define your mood, you'll never truly be happy. Just be yourself and confident in what you believe in. Ignore those who aren't constructive in their conversations and focus on those who are. Hang tough.
 
Darr there are plenty of people on here who know exactly why you did what you did, and you posting this only proves them RIGHT.I had lots more typed out but you are so not worth it, and I'm taking Double D's advice. If you have a problem with me, then man up and PM me.This is stupid and childish and I dont want to be a participant in this type of posting, its not why I am here.By the way, I would have just sent you this in a PM but you seem to have been having a moment and removed your PM and email. Geeezzzz Grow up and Grow some, put your PM back on if you want to go back and forth. If you dont then for the love of my maker.. DROP IT!!!And for the record, I dont pretend to have nothing, who would want this cr@p.
 
Also just so it has been said. How could I help people as much as I have, if I had not experienced these things for my self?? There's no way I could, unless I have been there or are still there on some levels......just saying, I dont expect a response.
 
Darr and Robynn, You are both people who have put your heart and soul into answering posts on this board and have both helped a lot of people which is the sole intention of this board. To help each other out. Darr is a good person and has been offended because he feels that sensory sypmtoms are being given more credence than the twitching which is the f part in bfs from which he suffers a lot. Robynn is bothered more by sensory symptoms and is not concerned with twitching because of it. However each of you has admitted to having the other symptoms and have helped people with both. I know you have both had rabid disagreements lately on this board but can't we just agree that this is a helping board and all of us are entitled to our opionions without being berated for them? This is not high school and you both want the same thing to help other people. Than by all means do it. There is room enough for all the help we can get on here. But please if you want to return this board to normal this arguing needs to stop. I am sure it upsets other people to see two good members going at it as much as it does me. No one needs to leave the board there is enough room for everyone to help but we need to openly respect each others opinions from now on. I hope this helps because it really breaks my heart to see this board belittled by petty arguments. If I have ever said or done anything to offend any other members on this board or seemed to have taken sides than I have been wrong as well. But from now on can we move foreward toward a more peaceful board? We need to stop anxiety here not add to it. Just my opinion.Mary
 
I agree Mary... Darr I did try and PM you with something along these lines, but you PM function has been disabled.Lets shake hands ( or at least agree to disagree) and move on. This has been going on too long. Just a comment I believe BFS is both sensory and twitching stuff. I have both. Some days the sensory stuff is bad, somedays the twitching is bad. Somedays it is both. They are both equally a challenge for me- I dont rank one above the other in severity, and I am sure it is the same for others as well.cheersRodger
 
As long as I have been on this site, first as a member now as a mod, there has always been personality conflicts. The beauty of this site, as stated above, is that there is room for all points of view, as long as they are not hurtful of others. Petty squabbling is dissappointing, but lets face it, we are not all going to get along or like each other, but we are going to treat each other with respect. As one of the mods, I try to keep tabs on what is going on here, not to dominate, control topics or to censor what is being posted here, but rather to make sure we are treating each other with respect and staying somewhat on topic for which the site was established. That said, I don't read each and every post, I simply don't have time. My mother has cancer, i have two children under 8 y/o, i'm married and own two companies.....I just can't keep up with every post! I do my best, because I love this site and what it meant to me way back when, but ultimately I fail every day at being a mod here. Sometimes, I just want to quit and let someone else take over the task, but quiting is something I have a hard time doing, so I won't. What I would ask is that the members here notify me via PM if there is offensive/disrespectful things being thrown around. Now lets get back to being a site for support and information dealing with BFS and try to leave the personal conflicts behind....I mean in the grand scheme of things, is it really important whos sxs are worse than the others? I mean this condition stinks for all of us, just maybe to different degrees.Lets get back to taking care of each other!Take care,Gary
 
Awesome post inzTwoToneTunes. I can honestly say that this board saved me also. If it weren't for the people here who pulled me through scare after scare I would probably be locked up somewhere (LOL). Seriously though, time and time again I would PM people on here who knocked sense into me and after 2 years, I am finally better and just want to help others who suffer from this crazy condition. ~Leslie
 
Other than John V. the founder, I am probably the longest running member of this site and for sure was THE authority of what this stuff (BFS) is, and what ALS is on this site. I spent a LOT of time and quite a bit of $ researching this stuff with 8 doctor buddies of mine that plugged me into medical info and neuro friends that everyday people (and even typical general practice doctors) don't have access to to get the info I was looking for to help not only myself, but everyone else going through the SHEER HELL I was going through in my early days with this stuff. It ws that info and the combioned info from other GREAT members over the years who also became expertes of BFS and ALS and what the differences are. garyM is one of them, and there are several others.I won't stand-by and watch a bunch of bickering ruin a site that SO many have contributed to over the years to help SO many people. I and BillBob share a LOT of the same feelings and info on this stuff, and we DO have lives we tend to rather than monitor this site on a daily basis. When there is a problem... we get notified and we step-in. If someone needs some specific info that they can't seem to find, they PM us and we'll answer the question for them. Other than that, everyone needs to play together, stop the nonsense, and play nicely, because with a click of a mouse, a problem person can be tossed out and blocked from posting or becoming a member again, even under a different name because we block your ISP and server address, so it's PERMANENT! I dont want to do that, but in retrospect, I don't want to see people leave the site, nor do I want to see or hear about this CONSTANT bickering. We have better things to do than play web site cop, especially on a Sunday afternoon, like it is right now for me. EVERYONE on here (members and un-named visitors) are looking for SOUND, SOLID and ACCURATE answers, and for reassurance that what they have isn't a one of a kind case and isn't life threatening. The last thing a newbie, or someone looking for answers wants to find on what is SUPPOSED to be a respected and authoritive site for answers is a web site with its members bickering over what comes down to nothing but just pure *beep*. BFS is a TWITCHING syndrome. It is called Benign FASCICULATION Syndrome for a reason. It is not called Benign Perripheral Oddness Syndrome. It is mainly about twitches AND the oddness that comes with those twitches. OF COURSE BFS has MANY more symptoms than just twitching, just as the common flu has many more symptoms than just a sore throat and coughing. There's no arguing there, and many of us suffer from those additional odd symptoms more than we do the twitches, but all in all, BFS is a twitching syndrome which is why it is called BFS.There should be NO bickering about what BFS symptoms are. We already KNOW what they are and we have accurate accounts of thousands of people over the span of decades to compare with, not to mention the reason why "BFS in a Nutshell" is at the top of every thread and why I wrote "Why You Don't Have ALS" part 1 and 2 a number of years ago to get ACCURATE information from on ALL of it's symptoms. If you've forgotten what they are, then I suggest you go back and read ALL of those posts again to re-educate yourself. There is no room for arguement here, period. It needs to stop and stop right now or someone WILL be tossed out and banned from the site. It helps NO ONE and makes us as a whole look bad. John didn't put this together, nor have Gary and I been around with many, MANY great members for years and years to end up looking bad because of a few people constantly bickering... and over what? Who's smarter? :rolleyes: Who has more acurate information? :rolleyes: BFS is more about twitches than perrifrials? :rolleyes: Do ANY of those even matter? I mean, COME ON! No one these days is sharing any "new" info that hasn't already been shared 1,000 times before in the past 10 - 15 years, so why is all of this bickering taking place? No one knows any "new" info on BFS than what we already know. Nothing has changed with BFS, and it probably never will, just like nothing has changed with how the common cold runs its course and what it's wide array of symptoms are (or can be). So PLEASE... stop all of the bickering and fighting or a solution will have to be implemented, and we don't really want to do that.
 
I guess BFS is not enough of a disease if people argue about what it is and what's not. I didn't see personal attacks or insults on forums where real diseases like ALS and MS are discussed. As a new member I'm a bit discouraged by these squabbles, really. Considering that the syndrome aspect of this disease is a bit cloudy there are no two members that have all and exactly the same symptoms so i don't think we should restrict what BFS is about based on personal experiences. I don't think that anybody wants to insult or minimize another's suffering.
 

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