Recent findings on BFS!

General Topics

Moderators: JohnV, Arron, garym

Recent findings on BFS!

Postby Airmade on September 4th, 2002, 6:08 am

Here's a link to a site that talk about EMG, read the Fasciculation Potentials part.

http://itc.utk.edu/itc/grants/twt2000/m ... graphy.htm

What do you think about this? :wink:
User avatar
Airmade
Member
Member
 
Posts: 26
Joined: August 15th, 2002, 3:33 pm
Location: Italy

ephaptically

Postby DaveKD on September 4th, 2002, 9:32 am

What does ephaptically mean? I tried and internet medical dictionary and could not find a defenition.
User avatar
DaveKD
Member
Member
 
Posts: 28
Joined: August 16th, 2002, 7:14 am
Location: Boston, MA

Postby Airmade on September 4th, 2002, 11:33 am

Hi Dave!
Because of my bad English I thougt I could find help from any of you to understand wich is the meaning of it...
Any idea???
User avatar
Airmade
Member
Member
 
Posts: 26
Joined: August 15th, 2002, 3:33 pm
Location: Italy

Postby Airmade on September 4th, 2002, 11:40 am

I found another link that says nearly the same:

http://www.ivis.org/special_books/Braun ... Potentials

It explain this as "cross-talk"... but still what does it mean???
User avatar
Airmade
Member
Member
 
Posts: 26
Joined: August 15th, 2002, 3:33 pm
Location: Italy

Postby Airmade on September 4th, 2002, 11:43 am

Hi Dave!
Because of my bad English I thougt I could find help from any of you to understand wich is the meaning of it...
Any idea???
User avatar
Airmade
Member
Member
 
Posts: 26
Joined: August 15th, 2002, 3:33 pm
Location: Italy

Postby Jake_the_twitch on September 4th, 2002, 3:05 pm

I read the article and I must admit it has raised some doubts on whether I now have BFS. It mentioned, fine individual muscle fibre twitches yet I suffer more from larger muscle group twitching as well. People can sometimes see my muscle twitches from across the room or even through my clothing. Somtimes they can almost be like spasms as well as repetitive twitches. Anyone else?
User avatar
Jake_the_twitch
Member
Member
 
Posts: 38
Joined: August 16th, 2002, 9:19 am
Location: Canada

Your getting worried just like I am! But I think we are OK

Postby DaveKD on September 4th, 2002, 3:20 pm

I saw the gray matter disease and thought "that will be what I have"!
Actualy I have large twitches as well. The muscle above my knee twitches a few times a day and you can see it through clothing. The twitches in my calves and arches are more fine and pulsating, but the random ones that are above my knees or on my lower back or but are stronger. (Luckily they are the random ones)
User avatar
DaveKD
Member
Member
 
Posts: 28
Joined: August 16th, 2002, 7:14 am
Location: Boston, MA

Postby Arron on September 4th, 2002, 5:14 pm

Hey all, keep in mind, BFS is a new term given for a "syndrome" that is relatively unknown and thankfully benign. It isn't that common, but then again, it isn't uncommon either. The one thing that is a sure thing is it is benign. It can not and will not "turn into" something else. It is what it is and that's that. There was a huge study on this at one of the largest medical clinics in the world and it was VERY conclusive.

Twitches come in all sizes. Tiny little ripples that are so fast and so fine, they feel like "buzzing" or "vibrations". Other's may ripple slowly but strongly, almost like a spasm. There are big single "thumps" and some that thump and bump over and over again and are so big that they move clothing and whole limbs. Some are here and gone in less than a second. Other's hit one spot and stay for days, weeks and even months. What you find as a description of a true" fasciculation" is about as outdated as what you'll find about twitches leading to ALS. Twitches do NOT "lead to ALS" at all. They are a SECONDARY action caused by the muscles ALREADY involved with ALS as the nerves die. By the time you notice twitches with true ALS, you will no doubt, already have other signs going-on by then and it will rapidly progress from there with no looking back.

Some people notice "worm like" slow movements under the skin. It is especially common in the arches of the feet and calves. This is common and is benign too.

Keep this in mind. If you read ANYTHING in a medical manual, you will scare the hell out of yourself because you WILL have some of the symptoms (in your mind anyway) that relate to just about everything in there, so don't even go there.

BFS is indeed a syndrome and is becoming recognized around the world. because of the fact that it is a benign condition, there isn't much research being done on it. I mean, why anyway? Why stop researching other nasty things out there to find out about something that isn't going to hurt you? Why spend $ and time on something that is benign? There is no reason to and I would flip my lid if doctors and researchers stopped researching for cures on Muscular Distrophy, AIDS, Hepatitus, Multi Drug Resistant TB, Polio (which is making a come-back) and countless other's. Yes, BFS is a pain in the ass and it is scary, why? Because we and the uninformed medical community were uneducated about it and were led to believe that "twitches lead to ALS" and that is BS if I've ever heard any before! Maybe there's another name that better suits this syndrome, personally I don't care. All I care about is that it is benign, it could have been worse and it is unfortunate that most of the medical community has no clue about it and can only relate twitches with a serious motor neuron disease and that is about as out of whack as burning witches, draining people of their blood to cure diseases and all of the rest of the old "hokus-pokus" that used to be "normal procedure" but was later dubbed "quackery".
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Postby Jake_the_twitch on September 4th, 2002, 6:05 pm

Aarron:

I live directly North of you in Vancouver Canada so tonight I will bow and pray facing due south. You are my GOD! Thanks for slapping some sense into my head. I was heading down the slippery slope of darkness and your post has let the sun shine again.

DaveKD, I hope you see the light as well.

LOL - I have to learn to laugh more and stop taking this thing so seriously.
User avatar
Jake_the_twitch
Member
Member
 
Posts: 38
Joined: August 16th, 2002, 9:19 am
Location: Canada

I agree

Postby Nole on September 4th, 2002, 6:47 pm

Thank you for putting it all into perspectiveAaron. Most of us are very healthy people with no other conditions and WILL live happy and LONG lives. Most of this syndrome is mind over matter, the less I think about it the less they happen and yes it is hard but what else can you do?? Since I am going on with my life and continue to do the things I love I rarely notice the twitches at all ( only when I wind down for the night). I ride my horse everyday with no problems, no weakness at all, and am very physically active. I have noticed I may twitch when my muscles are fatigued which is common in everyone and sometimes the way I am sitting or laying on a muscle may make it twich. I never twitch when I am physically active. So stay happy and healthy, stop looking up the bs on the internet cause it will drive you crazy and get out and do the things you love. We all need to support each other and think positive. :lol:
Nole
Selfless giver of time
Selfless giver of time
 
Posts: 218
Joined: September 2nd, 2002, 6:15 pm
Location: Northwest NJ

Postby Arron on September 5th, 2002, 12:29 am

Now you guy's are talkin'!! Go live life! twitching is NOT bad. Yes, BFS has some down points, fatigue, stress, aches and pains here and there, tremors, occasional cramps and of course the twitches, both big and small, but it is certainly not life threatening and there are a LOT worse things out there. Frankly, I'd take BFS over most anything out there, 'cause I know it's nothing that is going to take me away from my family. It's OK to be afraid occasionally when things flare-up. Just remeber it can not and will not "turn into" anything else... it is BFS and that is that. I have to say though, I have seen a lot of new evidence that BFS and Fibromyalgia "could be" one in the same.. either way, they are both benign, so who cares? Go fish, go watch the ball game with some friends. drink a beer or three, go for that Sunday drive, go on vacation or just hang around and do yard work.. whatever floats your boat to make you happy and do it KNOWING you are OK... you just have some minor "benign" glitches, but they are no big deal.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

NOT TO WORRY

Postby SCOTT on September 5th, 2002, 9:23 am

LETS GET TO THE SHORT OF IT,
FASCICULATIONS WITHOUT WEAKNESS IS NEVER ALS.
IN ALS FASCICULATIONS REPRESENT DEAD MUSCLES, THIS ONLY HAPPENS AFTER 6-10 MONTHS OF THE DESIESE FASCICULATIONS ARE THE END...END OF THE PROCESS NOT THE START OF ALS.
THIS IS A FACT .
A CLEAN EMG=NO ALS
PROLONGED TWITCHING W/OUT REAL WEAKNESS IS ALWAYS BEGIN.
THIS COMES FROM THE PAGES OF THE CLEAVLAND CLINIC DRS WHO ARE EXPERTS ON ALS.
WE ARE ALL VERY LUCKY TO HAVE ONLY BFS AND EVEN MORE LUCKY TO HAVE ARON...


THANKS AGAIN FROM US ALL ARON
SCOTT
Member
Member
 
Posts: 41
Joined: August 26th, 2002, 6:51 pm

Postby Arron on September 5th, 2002, 3:39 pm

Scott, now you're getting it! See? twitches WITHOUT weakness is a benign condition and just like you found at the Cleveland Clinic, it is posted just about everywhere else as well and it is a fact. The hardes thing for people to realize is that their doctors and NOT wrong, they didn't "miss" anything and BFS does NOt "turn into" anything. Once peole realize that, they will be just fine. I know... I was one of the one's that just couldn't be convinced and that is what provoked me to do so much research on these subjects. I was sure I was going to prove my doctors wrong and that I didi indeed have ALS.. well... I was wrong. I have BFS. Been twitching, tremoring, aching, fatiguing and everything else for over a year and a half with no weakness, no cordination loss, just my own stupidity for not believeing my own doctors in the first place. Oh well, now I can help other's with the same problems and fears that I had and that is why I am here, thanks to John and his great web site!
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

so lets get this straight...

Postby Twitchman on September 5th, 2002, 10:05 pm

lets say your butt cheek is twitching or any other muscle..if you can flex and control it that means you don't have ALS?
Twitchman
Interested
Interested
 
Posts: 12
Joined: September 5th, 2002, 2:53 am

Postby Arron on September 5th, 2002, 11:04 pm

No, that's not quite how ALS works. When you flex a muscle, you are working any number of "groups" of muscles all at the same time, not just one single muscle fiber. AlS attacks the nerves in the muscles fiber by fiber, not entire groups all at once. But in time, what you said would sort of be correct. ALS doesn't twitch butt muscles and then move somewhere else. It usually starts in a hand or a foot, ankle or the throat area, but it "can" start just about anywhere. It does NOT come and go. Once a muscle group starts, it progresses from there and spreads. It is highly unlikely to start in one area and then leave that area to go somewhere else. Once an area starts, it continually progresses from there-on.
Arron
Moderator
Moderator
 
Posts: 753
Joined: August 19th, 2002, 10:25 pm
Location: Sonoma, CA.

Sponsor

Sponsor
 

Next

Return to General Topics

Who is online

Users browsing this forum: No registered users and 11 guests