I am sooo sick of this boards postings lately. I had myself INTENTIONALLY BANNED from the "OTHER" forum because they ran me off telling me I had nothing that remotely seemed like *** and to live my life and not to stress myself out of there. I once too had myself banned from this board because I felt it did nothing but bring me down.This board used to be soooo helpful but now it just seems like a FIRENZY of FREAKAZOIDS including myself. I cant believe I have allowed myself to go down this route again. I did SO well and I had a little flare up and thought I'd visit some good ole friends here but I think they have all moved on. I try to I have said my byes but I always come back in hopes that I will have some good information to share or someone on here will.To WHOM IT MAY CONCERN, no offense but I have seen you on EVERY ALS website that I know of. I am not sure if your drying to doom yourself, make yourself feel better, scare us all here or what! I just know I was doing SO WELL but over the past few days I have turned into a train wreck and this bull *beep* is going to stop here right now....Like someone posted about the MAYO website and their studies which are highly CREDITED and I BELIEVE vs. any *beep* or Jane on the internet. ....I am sticking to that and my neuro and I hope to God I can refrain from EVER coming to this board again. I know I sound mad but the CRAP that is being disputed and said on this board lately is PURE CRAP AND DOING NOTHING TO HELP ANYONE.SI ANORA.
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Tired of Recent Board Posts
- Thread starter InkedMama
- Start date
MarioMasher
Well-known member
This is probably going to be my last post here, and it's for the exact same reason Lovely just mentioned. I don't come to this board to learn about ALS. I come to this board to learn about BFS. I come here to learn about the condition that I (and all of us here) HAVE. Why people continually want to turn this into an ALS board, and a "Here's why I think Alonzo is wrong" board, is beyond me. If you're dumb enough to go surfing ALS sites and reading scary sh*t that DOESN'T EVEN APPLY TO YOU, then that's your bad. You screwed up, and now you're paying the price for it. Don't come here and drag everyone else down into your misery just because you did something dumb. This board isn't a personal dumping ground for people who did something dumb and now need a social group to hold their hand over it. The reason most people come here is because they want to move away from that.I post here because I want to help BFS sufferers, especially the newbies. Alonzo has done a great job putting this entire website together, and I feel I owe it to him to try to pay it forward, and return the gratitude by doing the same. But I am awfully sick and tired of reading post after post by people who DON'T HAVE ALS, yet seem to want to convince the world that they do. And then today, when people start actively picking fights with Alonzo, and calling him an idiot? Sorry, but that's it for me. This is no longer a place I want to be. Do you know I have learned more about ALS from THIS site than I have from anywhere else? I had never even heard of bulbar until I came here. Seriously, this isn't even an ALS site, yet I swear that every 3rd or 4th post is an ALS tutorial. Why? BFS AND ALS AREN'T EVEN REMOTELY SIMILAR CONDITIONS! I have intentionally stayed away from ALS sites for four months now. And since people are insisting on turning this site into an ALS site too, this marks the last post I will ever make here. Sorry, but those are the rules. Do not bring your ALS sh*t here, because now I am out of here.To all newbies...If you are sincerely looking for help and assistance with your BFS, and you want to learn a little more about how it will affect you in the short or the longterm, feel free to drop me an email at . There, look, I am giving out my own personal email address because that's how strongly I feel about helping others. Alonzo once helped me off the ledge, and I want to help you off the ledge as well. BFS is a crappy condition, and I know firsthand how unnerving it is when you first get it. So if you want some reassurance from someone who's not a zealot, who's not a hypochondriac, and has done his homework on this subject, feel free to drop me a line. I have always preferred communicating with people on a personal level rather than a weird message board anonymous level anyway. So if you really would like someone to talk to (and you aren't just going to bombard me with the same question day after day after day), feel free to drop me a line and I will be happy to respond. Just be warned though, I have no sympathy for someone who isn't interested in making themselves feel better. If you're just a pity case who wants reassurance every five minutes of the day, and you keep going to ALS sites even though you know it's bad for you, don't bother. I practice tough love because that's what I think people need to hear. If you truly want a listening ear, and you truly are interested in moving past the anxiety phase, drop me an email any time you want, and I will be more than happy to get back to you. Thanks to the example set by Alonzo and the people who founded this site, I will always help if I can.Otherwise, my time here is done. Thank you bfsforum.com for everything you have given me, and a very special thanks to Alonzo for doing thousands of hours of BFS research on his own dime, and never getting paid a cent for it. He could have made 100,000s of dollars doing this sort of stuff if he was a doctor, but he did it in his own time with his own money because he knew it was a site that would be able to help. And anyone who comes here just to pick a fight with him, shame on you. Next time, try being a part of the solution.No one comes here to learn about ALS. This is not an ALS site. Stop infecting everyone.
Just a reminder to all members here, if you see a post that is out of line, let me know....My mother is battling lung cancer so I just don't get here that often, and I don't have time to read every post. So pm me if there are issues here. I will delete malicious posts and ban the users that post them.Take care,Gary
I think there is a strong point here.This forum is for people with twitches and that have been cleared from other illness/illnesess that may account for them. They may have been told that they have got BFS, FCS, PNH, or just being discharged with "there is nothing wrong with you" such as myself.People in this forum are keen to know how other members cope with their problem, what's their experience, what they have tried, and so on.I do not think there should be room for information gathered "second hand". What would be your opinion of a journalist that gets its news second hand? Crap. That's right: crap!!!!And crap may hurt.So, please refer only to information you've got from your Neuro, Neurophysiologist, GP, or just reflecting your personal experience.This forum has been populated by many, many, many people. If we should use that information, you'll find out that that's a lot of data to take on.I've been here for more than a year, and members have left only because they had enough of it or wanted or had to move on.This is as a matter of fact.
hCapitalize
Well-known member
Hi thereI don't think BFS is remotely like ALS, there is just a lot of ignorance out there which leads folk with an over ripe imagination astray, (me included in the past) It is really hard to unconvince yourself once you think you are not long for this world, but if the newbies look, they will realise that there is nothing they are suffering from that someone else on this board has not experienced and is still alive.I was really going crazy when I started on this board, I now have enough sense to keep away from reading certain stuff.
Why on earth let one or two tarnish what has been a godsend to many folk past and present is beyond belief. However i have not seen a single post that i would see as a deliberate attempt to put fear into members here. Ive seen lots of anxious posts from troubled minds that seem to display a negative attitude but that about all tbfMario, you have been one of the better posters who has that positive helpful attitude you will be a loss to this forum. However Its your decision to what you do and what effect this forum as on you, and i sincerely wish you well for the future.
Hey Lovely and others dont go!! I have had a bit of a break from this board lately too, but just came back to say hi and let you know I am still here and after 14 months of twitching i am ok and you really can get past this!To those who are trying to bring this wonderful site down, shame on you! Aaron you are a champion, if it was not for you and this site I dont know where I would have been when this all started!! I just wanted to say thanks, you are a legend!!I will keep posting here I feel I owe it to the newbies, we are ok we just have BFS!!Warm regardsSandra
I admit I called Alonzo out once, I also think he has done a great job with this site, and it is a godsend. He does not normally post, but was recently, and his post was basically brow beating a newbie that was scared to death. I thought the newbie's post was a legite question, and I did not agree with all of what Aaron was writing and I called him on it. I agree with 95% of what he says, based on my own research, but we need the truth, by stating something that simply is not true, it puts all the other information in question.As for the ALS talk, when some newbie comes to this site, what fear do they have, that they have a pinched nerve, lyme disease, Scarlet fevor? I would wager 90% who come to this site are convinced they have ALS. I believe that a big part of this site is educating these people on why they do not have ALS, and how it is possible for it to be BFS, and allow them to get past this fear and begin to learn more about BFS. And as many of you know, once you think you are over that fear, it tends to creep back into our lives, and needs to be beat back down. How can you do this without mentioning anything about ALS. Its impossible. And it would be selfish beyond description to deny this to the new people who come to this site, allowing them to suffer like we where when we first came to this site. There is no question that anxiety is getting the best of some on this site, I have some real strength issues right now, and I am concerned, but I have read nothing on this site in the last month that has scared me in the least, I am not sure what you are reading into, but to me it is clearly driven by your own personal anxiety, and with all due respect, the overall job of the board is more important than your own personal anxiety issues. If you are totally past your ALS fears, good for you, either move on or suck it up and realize the topic does come up on this site, it has to.Mario, you have been a huge asset to this board, you have given alot of people moral support, and really have a common sense approach, I think it would be huge loss to this board for you to leave. I hope you rethink it.
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