Friend Struggling with ALS Symptoms

Darr, I really dont understand why you are cussing at me at all, what did I do. I really think you are misunderstanding my question, or maybe I typed it out badly I was very honestly just trying to understand what you and I'm ok were saying, which she explained very well and I agreed with her and you.I was only trying to get a grip on whether you guys were saying that the mind brings on the BFS, or ...do you get BFS and then the mind brings on the twitches??Why does that *beep* you off so bad that you would start cussing at me?? I'm only trying to understand other peoples theories on this, thats it. Can we not start the attacks again?? Take Care Robynn )

Darr it was me that said 'just twitching' as part of my repsonse, but I was only contexting in the sense of establishing 'symptoms' that each individual may have. I was not in any way shape or form 'ranking' them. Twitching is by far my most common symptom and the most annoying/concerning!cheersRodger

Thanks Rodger but I think Darr is mad at me for some reason, apparently I cant ask questions anymore without if being turned into this everytime, I was really just trying to understand.

darr, not sure where you are going on your post line here, but you are out of line.

Who are you?the board policeman?whatever man,tsssk laaaaame.man this board has gone to the dogs since all the old-timers were chased away.

board policeman? darr. really? you sound like my twelve year old. Under what circumstance is it acceptable to tell someone to pis* off... this isn't the 8th grade.

I never said p*ss off to anyone.if i wanted to. id say p*ss off.psssooaaffff is expressing the exhalation of breath through lips in exasperation with this OBSESSION with dividing twitching and bfs into two seperate things.Traveler this aint the 8th grade but you guys are jerking off like it is.You defending your crush in the playground?huh tough guy?Aboutbfs.com= the "mommyLDN" life story, sensory symptoms and anxiety board. ..simples..My eyes are open.

Dont worry Darr, I'm gone if you want me gone. I cant believe some of the sh*t you have said to me or about me. Sorry if me sharing some of my history has offended you so much, I was only trying to give something of an example of what stress and trauma can really do to someone physically, and I also consider some of the people here my friends so I confided on some level. If you dont like my post then dont read my post, it really is that simple.Once again I never was trying to separate twitches from BFS, I dont even see how that is possible

yeah thats it, an absolute crush, how did you figure it out? Listen pal, you have offered some good insight on this board, but your personal attacks are juvenile and uncalled for. Why the heck can't you just offer your knowledge and advice and not blast someone that has a different approach than you?,, tough guy... geez you have got to be kidding me.

How can I not read your POSTS??? you post a billion times a day on every single topic.600 posts in 6 months?really?Your life story? yeah that offended me. this aint the mommyLDN life-story board.No doubt you help lots of people. Iv always said that u do.But Im an invisible internet person im not here to pander. Il say as I please until a mod boots me.My intentions are always good and il back my record of helping people too...just like il back my twitches on you-tube...i suffer as bad as many and way worse than you.Il remind you I had "friends" on this board too....but they are gone. why is that again? What do u twitch?5 times a day?Im calling it like I see it.....This board is dedicated entirely to you, your sensory symptoms and your anxiety. ..simples..

5 times a day, what the hell, where did you get that figure, and are you honestly going to turn this into a "who is suffering more" contest. I will post when I think I have something to offer someone, to help so there fear and misery isnt or doesnt get as bad as mine did. Some days I am twitching hundreds of times a day, others are quieter, what does that matter, NO the twitches dont cause me as much misery as the sensory crap but who really cares Darr.Its not a freaking contest to see who suffers more or who twitches more, thats ridiculous.And I will post what I want when I want as long as it does not offend or hurt anyone, what do you care, same as you I will say what I want until a MOD tells me I cant say or do that.You really are showing your true colors. I did nothing that warranted this attack from you and you know it, get the f**k off my back

And just for the record, I post about once a day, sometimes not for 2 or 3 days, and I rarely post about my symptoms anymore, so get your facts straight.

Guys,come on.Dont we have enough *beep* to deal with,without falling out about who does what and how many times we do it.I know we are all stressed but taking things out on each other isnt going to help.Time to take a step back not disappear from the board as all contributions help someone somewhere..........if that sounds like the board police then so be it,i do it for a living anyway.I for one dont know where i would be without the great people on this board so long may we continue posting on here as it will mean that we are still ok and able to help one another.

Steve, I appreciate and respect what you are saying, and please know that I was only defending myself because I really didnt think that I had said or done anything to provoke Darr's attacks. Take care Steve )

I've only been on here twice in the last couple months and both times mommyLDN was fighting with someone.The first one I saw was with Bond007 and now with Darr. I've seen a lot of people come and go here and I'm not passing judgement,lets just hope that people (ml) develope some Self Awareness before they wreck this sight.This is a place of support and learning, the only opions that should be challenged are the ones that say it might be NMD, our doctors have told us its NOT nmd so we can dispute that opinion with impunity.Its my feeling that people can bring forward other ideas/ANY IDEAS as they feel fit, they ALL add to our knowledge.Later, Lefty

Lefty, apparently you didnt read some of the actual posts on this thread. I asked a question because I was trying to understand what Darr and I"m ok were stateing as a reason for BFS (which was a theory that I am very open to), and I was mis-read and attacked by Darr (AGAIN). I was not trying to fight with anyone whatsoever, I was simply defending my self from Darr's personnel attacks (which shouldnt even be necessary). Just because I defend myself does not mean I'm trying to fight with anyone. I'm really getting tired of being judged by people who dont even know me. Simply reading a couple of posts where I've had to defend myself because of some person who I apparently rub the wrong way, is hardly grounds for you to say that my intent is to ruin this site. I've tried to do nothing of the sort.And for the record, I was hardly the only one arguing with Bond007 that night about his Leaky Gut theory.

Hi all,Wow, I have been off the board for a bit and finally read this thread…I am shocked as to what happened…It seem to me clearly a misunderstanding that spiraled down into a very very negative exchange between two of the most giving caring people I have known on this board, ionyZarrion, and Robynn (mommyLDN)(and some others). What it seems was a simple question by Robynn, was misheard as provocative, and culminated in attacks on her (Aboutbfs.com= the "mommyLDN" life story, sensory symptoms and anxiety board.”) which really seemed to me to be not only uncalled for, but totally untrue. Robynn by and large helps others, but she too needs help sometimes, and asks for it, which is why we are all here…nothing wrong with that...Both she, and ionyZarrion, were lifesavers to me a few weeks back when I was in crisis.…Communicating by email for a decade, I learned early on that all nuance is lost at times…and we can easily misinterpret another’s intent when we do not have the benefit of seeing their faces, or hearing the tone in their voices…perhaps that was one of the issues at work here…for example when ionyZarrion wrote “pssssophffff whatever,” he did not mean “p*ss off”…which seems to have given offence, and inflamed things…LeafLander, it is a misperception to base who Robynn is (or ionyZarrion or anyone for that matter) on two exchanges she had with two members…she was not the only one to challenge Secret agent man’s theory, and to my reading this exchange with ionyZarrion began with her asking a question of him and AllGoodHere, not to start trouble, but to understand…Please do take the time to reread this thread and, some of the hundreds of other posts where she is all about being a loving, caring, supportive person, before you advise that she develop self awareness. I hope as you said that she is also entitled to: “bring forward other ideas/ANY IDEAS as [she] feels fit, they ALL add to our knowledge.” I am not addressing these issues to defend Robynn or ionyZarrion because I have a crush on either one of them, I can assure you, I don’t, but because I want to let newcomers know that this thread is not representative of who either of these people are based upon my knowledge of and experience with them, nor is it representative of who any of us are here, or what we do. I also sincerely hope that Robynn and ionyZarrion will “kiss and make up”…Afterall, you two have had numerous pleasant supportive exchanges, and this one unfortunate incident should not destroy that… nor should it keep either of you from the board because you may be avoiding each other…You both have so much to offer to all….We could use solidarity now as we face the holidays and a New Year with troubling symptoms and fears…We should not be divided for we need each other’s strength and support and guidance.…Just my two cents...Best,Victoria

Darr would you please, please tell me why you are underlining and bold printing TWITCHES ALONE??? I'm trying really hard to understand what did I say that was so wrong, you ARE misunderstanding what I was trying to ask. I was NOT trying to seperate twitches from BFS, I was just trying to figure out if you guys were saying the mind causes BFS or if the mind just causing the twitches THAT COMES WITH BFS??? Why is this being turned into all this???

TWITCHES ARE BFS THEY DO NOT COME WITH BFS.Have I gone totally mad?Can noone else see this?Matbe it is me.Maybe I don't actually understand English. I better hand back both my 1st class honours degree and my *beep* M.Phil in literature.Benign Fasciculation syndrome. The fasciculation is the major part. BCFS add in cramping. If you cannot understand the word syndrome in the context of these two disorders then I can only direct you to the O.E.D.This is my last post on this thread.

Benign Fasciculations Syndrome= Benign fasiculations often with other symptoms, hence the word SYNDROME=a GROUP of SYMPTOMS that together are characteristic of a specific disorder, disease or the like.This is such a stupid argument to be having on here. And no Darr, you did not misunderstand what I typed, you misunderstood what I meant, thats my fault