Most of the old time BFS'ers have simply moved-on. We've been in contact with a few over the years, and a few have been in contact with us over the years to say hi, to let us know how they are doing, etc. It isn't real often but we DO get an e-mail from time to time from some over the past 10 - 15 years. I can say with all honesty that not a single ONE of ANYONE I, nor anyone I know, that has been in contact with ANY of them have gone-on to develop anything at all from their BFS. I have been around for 15 years and still have it, although VERY mild these days, but I still get occasional hot spots, tremors, shakes, weak "feelings" and rubbery legs, drained energy, etc., etc. The biggest thing to remember is that the ENTIRE neuro medical community stands behind what we have been saying all along, and they say the same thing, that BFS is in NO WAY, shape, or form, associated with ANY neuro muscular disease, and it does NOT "turn into" ANY type of neuro muscular disease. if that isn't enough for you folks, then NOTHING will EVER convince you. I mean really, have ANY of you EVER heard someone tell us that their neuro said BFS turns into ALS, or that it is a pre-curser to ALS? HELL NO! Garym and myself get countless PM's from people over the years telling us info about their neuros. We TALK to neuros, and funnier yet, neuros contact US for info sometimes, especially in the beginning days of this site and when we had the old site, which is way beyond most of your days on here, but WE were there, and we are STILL here, alive, doing well, and with no ailments associalted with BFS other than the occasional and typical BFS symptoms.The ONLY "cure" to BFS is to stop worrying about it and fearing it! When you are worried, or are in fear, your body releases chemicals that BFS feeds on. We have known this going-on 2 decades now. Some of you have had this stuff for quite a long time and yet you are STILL on here doubting, worrying, and now wanting to contact old time BFS'ers to again re-assure you that BFS is just BFS. If you aren't worried then there is no reason to contact old posters. It wouldn't even BE an issue. I mean, "I" don't try to contact old time BFS'ers. Garym doesn't. John V doesn't. WE are all still here, we still hear from old time members on occasions and not a single one, nor a single viable neuro clinic or neurologist has ever said that BFS turns into ANY sort of NMD's or is a pre-curser sign of a NMD. As far as contacting old members; it's a public site. I am not going to tell anyone to not do it, nor am I going to support doing it. I am staying neutral. I am willing to bet that most of the contact e-mail adresses are out of service anyway. Internet technology 10 - 15 years ago was WAY different than what we have today, and the usual ISP's back then (AOL, WebTV, etc.) are all but long gone these days to much better an faster systems. People change e-mail addresses faster than they change underwear sometimes, especially these days. Cell phone numbers, work places and phone numbers, home phone numbers, etc, all get changed, but I am not saying you can't try. I just feel it is redundant to bother with it when we already have quite a few old timers on here, and more importantly... the entire neurological & medical community standing behind what we have been saying all along. What more do you need? It's REALLY time to move-on and quit DWELLING over this stuff. I mean, really. Some of you have had NUMEROUS EMG's over a span of time that NO ALS patient could survive and yet I STILL see them on here and I STILL get PM's from them "worrying". That isn't BFS, that is chronic worrying. People like that don't need a cure for BFS, they need a cure for habitual worrying and fear/anxiety. There is NO editing of information on this site. There is NO omitting information that would make someone believe anything other than the information on here. We have NEVER deleted posts that have led to contrary information than what is on this site. We have NEVER changed info to lead ANYONE to think BFS is, or isn't anything than what we already KNOW it is. There isn't one SHRED of info on this entire site that points to ANY contrary information that the Mayo Clinic and other HIGHLY regarded neurological medical entities don't also say or support. It is what it is. I just don;t see the NEED to contact old posters or to do yet another poll on BFS. The info we have on here is ACCURATE and is PARALLEL to what ALL neurologists say, so I ask you again, what more do you need? It's REALLY time to move-on and quit worrying about this stuff.
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