Herpes & BFS

Post your questions about BFS here

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Postby Jake_the_twitch on September 30th, 2002, 3:29 pm

This thread is getting unnecessarily ugly. Let's face it, these neuros said 30% of the cases may be caused by the herpes virus. Even if that is true that leaves 70% that have other causes. My Neuro won't even guess as to the cause because they simply do not know and speculation has absolutely no place in clinical medicine. Speculation is left for researchers who do not have the human aspect to be concerned with.
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Postby Guest on September 30th, 2002, 3:39 pm

THATS WHAT I ( USED TO?) LIKE ABOUT "ABOUT BFS.COM" WAS THAT THERE WAS NO BICKERING... JUST STAIGHT FORWARD INFO FROM PEOPLE WHO HAVE OBVIOUSLY DONE THEIR RESEARCH AND ARE DONATING THEIR TIME TO HELPING OTHERS ALLEVIATE THEIR FEARS. THANKS TO EVERYONE ESPECIALLY AARON FOR ALL THE SUPPORT. LETS NOT GET NASTY. OH YEAH, TO ME IT DOES SEEM ALMOST TOO SIMPLE TO SAY HERPES VIRUS COULD BE THE CAUSE OF BFS... ALMOST LIKE SAYING A HANGNAIL IS THE CAUSE... WE'VE ALL HAD EM!
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Postby Twitcher on September 30th, 2002, 3:55 pm

In my opinion, the etiology of BFS may not lay with one causitive agent. I think that there may be several conditions that cause the twitching associated with BFS. My Neuro says both anxiety/stress and/or irritated nerves can cause it. I tend to focus more on anxiety as a cause because I have major problems with anxiety and it is something to which I can relate. I wouldn't say that it is the only cause though. I agree with Doc Jon about chemical changes in the CNS.
I also recognize that there seems to be a very definite viral connection. I wonder if maybe there is a correlation between the chemical changes brought on by long-term anxiety and viral infection. Does the anxious mind produce too much of chemical X that in the presence of certain virii causes muscle/nerve irritation?
Really, the possibilities are many, and I don't think we will ever know what causes it. (in our lifetimes) Honestly, I don't want to much research done on BFS. It is known to be benign, so I feel research money should be spent on the devastating NMDs out there. I'll twitch all by lonesome, help the ones that are dying.
And I can't end this without commenting on the low levels this thread is sinking to. We all can't agree, but we can certainly all act like adults. There is no need for ad hominem attacks and totally disregarding someone's position. If nothing else, state your point and agree to disagree.
“Be kind, for everyone you meet is fighting a harder battle.” - Plato
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Postby JimK on September 30th, 2002, 4:07 pm

So it seems to simple. I agree. I doubt if it has anything to do with it, if it were that simple, they probably would have figured it out by now (maybe not though. I don't think much effort & research has gone into the syndrome). But everything is worth researching.

Arguing is one way to get to the bottom of things. Asking simple questions is another. You should not be afraid to voice your opinion, yes even Aron, and argue it. There's no hard feelings, rip into me, I just want to help. I want to be pro-active in researching this & not just come on these forums to be reassured its all benign just to make me feel better.

Doesn't anybody have opinions on how this started? Maybe pesticides, foods you ate, exposure at work. DON'T BE AFRAID TO POST IT HERE, EVEN IF IT MEANS GETTING ALITTLE UGLY. Just shake hands at the end of the thread & admit I'm right, ha, ha.

Sorry to have gotten alittle nasty Aron. I just got back yesterday from the hospital for emergency back surgery. I was never in such pain in my life. NOTE: My butt cheek & thigh were twitching non-stop until after the surgery (L5-S1). Pinched nerves seem to have something to do with some twitches also.

Keep posting everyone.
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Postby freak on September 30th, 2002, 5:15 pm

Here's the deal. BFS is caused by...ourselves!!! We stress, we obsess, and we worry ourselves sick. All you have to do is read the posts on this forum. Everyone is freaked out about dying. GAD here, OCD there. I'm the same way, so don't think I'm slamming everyone. I'll do some pointed slamming in a second.

Herpes as a cause??? Whatever! Get a grip, millions of people have herpes. This would be already be a known cause, JimK! It would be simple to test that theory. Hell, it would probably be listed as a symptom of herpes.

JimK, you're an idiot. Arron, you're an annoying know it all. I respect Arron though because he educated himself and is always posting to help people. JimK, wasting time on dead ends is not the way to find the cause. You need to be much more focused. Plus, this forum isn't even about find the source of the syndrome. It's for answering questions about BFS...you know, for the newbies. If you want to solve the BFS puzzle, stop posting to forums on the net and get your ass into school. Become a Neurologist and then, when you have a little more info on how that wasted space above your shoulders works, you can enlighten us all. Until then, go somewhere else and disrupt their forums with your pointless banter. Pinched nerves have something to do with twitches? Thanks, Einstein.

Flame on! :twisted:

(the above is all in good fun)
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Postby JimK on September 30th, 2002, 5:38 pm

Lumps takin'. I can be an idiot sometime. You are so right about the purpose of this forum. Must of been all the pain meds I'm on for my back (no excuses though). Thanks for straightening me out. My apologies. :? Especially to you Aron, you do more good than harm.

Next subject please...
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Postby Jake_the_twitch on September 30th, 2002, 5:52 pm

Who said STRESS wasn't a common thread for all BFSers? :lol:
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Postby Freak on September 30th, 2002, 6:03 pm

JimK, hope your back surgery was a success. Were you in much pain beforehand? Good luck!

LOL, Stress? WHAT STRESS???
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Postby Arron on September 30th, 2002, 7:00 pm

Man! What a mess. OK, here's the deal. I am on here because I have lived with this crap for almost 2 years now. I am self employed and make really good money, so I can afford to to whatever I want, whenever I want, which in turn means I can do as much research as I want and be on here helping to ease the minds of other new comer's with serious fears and to help point them in the right direction as much as I want or as little as I want. I wanted to give back what I took from other's osting on here and the MedHelp.org site, so I started my own regiment of research and have logged literally thousands of hours scouring the internet, doctors manuals, issues of JAMA as wellas getting my hands on research that is for doctor's only that probably most of you don't have access to.

ALS is rare, EXTREMELY rare, only about 15 cases a day are diagnosed. These people are so worked-up over symptoms that are most certainly NOT anything to do with ALS (according to their posts) yet they aren't afraid of dying in a car accident or getting incurable cancer or anything like that, which is about 1,000 times (or more) more likely to happen than getting ALS or any NMD. Figuring on the statistics that 1/3 of the population gets some kind of cancer or another...

Because of my own fears, and other personal reasons, I did a *beep* load of research on these subjects. I play golf and go sporting clays shooting with about 8 different doctor buddies of mine, all heads of their departments, not just run of the mill MD's. I get "classified" info from these guy's that is "for doctor's eyes only".. well, it's nice to have good buddies who help you in your research! Why do they help me so much? Because none of them had ever even heard of BFS but had known about some kinds of benign fasciculations of some sort or another and they thought my research would do all of us some good. Yes, I do know a LOT about BFS. Call it self proclaimed or not, I don't really care. All I want to do is help ease the minds of people with obvious BFS symptoms so they don't lose precious time out of their lives or from their families, and certainly help direct anyone who has suspicious symptoms to see their neuro imediately, but when people come-out and slam me and say I'm an "annoying know it all", or that I "don't know s#*t about what I'm talking about". It doesn't make me want to stay here anymore.. I don't need that and taking pain medications or whatever is no excuse. I take medications too but if I said I wanted to 12 gauge your butt, it certainly doesn't excuse it!

Not all neuro's know everything, "top dog's" or not. Information has to be taken at face value and studied for long periods of time before any conclusions can be made in stone, not just one or two studies, such as Herpes and BFS, and even then (much like the Sacchrin issue) aren't always set in stone even after lots of research has been done.

I never said BFS ISN'T caused by Herpes, I said it would be hard to tell being that so much of the population is carrying the virus. Yes, I might be quick to jump to the conclusion that it isn't "caused" by stress or anxiety, but I did certainly say that those are major factors in it's course. There are LOTS of people, including myself, that had no anxiety or stress in their lives when their twitching started and that everything was fine UNTIL they looked-up "twitches" and became mis-informed that it is ALS. THAT's when the s#*t hits the fan, NOT before in many cases, so that would kind of point away from that theory of stress causing it wouldn't you think?

BFS has many faces and has many common and not so common symptoms, just like any virus, such as the Flu. Some people get it with very mild symptoms and other's well... die from it, depending on their immune system, age, etc. Can't BFS be like any other virus? Of course it can. That's why most everyone has "some" common symptoms and other's may have more or less symptoms, such as tremors, aching, cramps and so on.. ALL of which are not seen in every case but are certainly part of the whole picture in a percentage of the people.

I don't like being slammed. I have better things to do than sit here and listen to a couple of people make rude remarks and rude posts about something that was misunderstood in the first place. I wish people would actually read what other's post before going -off on a little baby tissy. There are certainly other ways to state your opinions other than the crap I previously read. See ya... I'm outta here! Don't clap too loud and I'll hurry up so the door doesn't hit my ass on the way out... I'll keep my research to myself from now on.
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Postby Freak on September 30th, 2002, 7:57 pm

Wow, Arron please read the last line of my post. I was not being serious. I was just making a point about the way the thread was going. This board is better because of the people that are here that do know the difference ALS and BFS. When I first started twitching, this board was a big relief. (Thanks DaveKD)
Like I said, I respect you (less now) because you did take the time to educate yourself. Don't stop helping people out because your feathers got ruffled. Yes Arron, the board needs you.
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Postby JimK on September 30th, 2002, 9:05 pm

I'm the only one that dogged you here. Don't leave the board just because of me. I was an idiot like freak said. You're extremely valuable here. People need your opinions not mine. I am logging off and rightfully so. I won't enter this sight anymore. Sorry to have caused such a ruckess. I'm learning new things everyday, and today I learned to keep my hotheaded opinions to myself.

Good luck to you all.
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purpose of this site

Postby Dr. Jon on October 1st, 2002, 3:08 am

Jim, freak and arron, no one needs to leave this site! Its not uncommon for a poor choice of words to be used when posting umognst people you have never met face to face. I suspect that if together the three of you could have a beer together and laugh about what has happened!
With that being said i can tell you that i have never met arron and may not agree with every word he says but my gut tells me that (like me) the only reason that he spends as many hours posting as he does is that he truely wants to prevent others form going through the living he;; that he did. I can tell you that for me that is persisely why i devote any time to this at all. So lets keep our purposes on track here, and keep in mind that there are those that are viewing for the first time with the same fears that we all had at some time. It is factual reassurence that will help the most and all three of you have something to offer in that arena!
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Postby kEG on October 1st, 2002, 9:17 am

Hi Guys!

I have herpes, my twin does not. We both seem to have BFS. I once considered herpes a possible link, until she got BFS. I don't doubt there is much to be learned, and I think it wise to continue to research every possibility.

The more we learn, the better off we all are. The fact is we don't know where BFS comes from. There could be several causes from what I have been reading. Viruses are one of them. I have NO objections to each individual finding their own personal cause.

Luck to all of you.
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Postby Debbs on October 1st, 2002, 10:11 pm

I have never had chicken pox !!! but have had the occasional cold sore, I have no idea if its related to Bfs but anything is possible.
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Postby tlotoxl on October 2nd, 2002, 6:49 am

It would seem possible to me that herpes would be a prerequisite for BFS (given that almost the entire population has had chicken-pox or at least been exposed to it) but it doesn't seem terribly useful to me in developing a treatment or a cure - if only a small percentage of the number of people who have had a herpes-related outbreak develop BFS then it seems obvious to me that there is a more critical precipitating factor involved, bet it genetic, dietary, viral, bacterial, parasitical or a combination of all of the above, and that that factor is of much more interest to us and should be of much more interest to the medical community.

mind you, all research is good research just so long as the money isn't syphoned off for vacations in the carribean :)
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