BFS Convention?

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BFS Convention?

Postby Carolmarie on March 13th, 2003, 1:54 pm

I think it would be neat if somehow there could be a BFS convention! I don't mean national or international, but in some localities around the country that would be within driving distance. It would be nice to meet and greet fellow BFSers. My city is out, though. When I called my neuro's office and asked the secretary if there were other patients who had benign fasciculation syndrome that I could get in touch with she said she never heard of it! Imagine how that made me feel!
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Hi

Postby reneeintx on March 13th, 2003, 8:28 pm

Hello,

I think that would be a great idea :) Did you go to a neuromuscular specialist? My neuro has diagnosed people with bfs as he deals with movement disorders daily. I would like to meet other people in my same situation.
It was kind of weird today... I was at the dentist office sitting next to another lady. We were discussing dental problems and I told her that was the least of my worries and she said why? I had to let the cat out of the bag. I've been wanting to talk about it with a tangible person(with anybody else besides the doc or husband). Guess what!! She's had twitching for 6 months or so and went to neuro.. same diagnosis as we got. Well her GP started giving her B12 shots, which she now takes once a week. The twitching stops unless she forgets her shot. I'd like to try it. But I'm a chicken. I wish it would stop on it's own. :(
Have you heard of this?

renee :)
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Postby Carolmarie on March 14th, 2003, 8:32 am

Hi, Renee. I saw a neurologist. He's one of the best in our small area. We are in Maryland. I've never heard of the B12 shots. I would try it in a minute. B12 is harmless and what would you have to lose? The worst thing that could happen is that it wouldn't work! I've even thought of posting a personal ad in our newspaper that would say something like: "Diagnosed with BFS? Contact me..." so that I could talk to a tangible person. That's really bizarre about the scenario in your dentist office. I am almost envious! Take care and keep in touch! (PS: My first twitch attack was 9/12/02.)
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Postby Davidd on March 14th, 2003, 6:28 pm

I think a BFS meeting is a great idea!

As for B12 shots, when I went to the doctor with these initial symptoms they did a blood test to see if there were any blood-related issues. From what I remember, a lack of B12 can cause neurological symptoms. I've heard of people who have tried B12 vitamins in the past to help relieve the twitching but I don't recall if it had worked for them. I tried taking B12 for awhile and it did nothing. But, I hope it works for the rest of you!

--David
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Setting up BFS convention

Postby TimJA on March 18th, 2003, 10:08 am

You gauge interest for a meeting on a site called http://www.meetup.com

It was profiled in the New York Times last week, it's legit.
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cmfa is the real term

Postby g007one on March 21st, 2003, 4:42 pm

HI FOLKS.....I JUST THOUGHT I WOULD TELL YOU GUYS THE OFFICIAL NAME OF THE PROGRESSIVE MUSCULAR DISEASE IN WHICH YOU ARE ALL TALKING ABOUT. THE OFFICIAL NAME IS CONTINOUS MUSCULAR FIBER ACTIVITY....THE DOCS HATE TO TELL YOU THE REAL OUTCOME, OF HOW BAD IT CAN GET ESPECIALLY THE OLDER YOU GET....YOU PEOPLE CALL IT BFS. I CAN TELL YOU BFS IS THE TERM SOME DOCS GIVE YOU WHEN THE ARE NOT EXPERIENCED WITH CFMA.....BELIEVE ME IT IS NOT NORMAL TO TWITCH EVERYDAY....VERY ABNORMAL....LETS GET REAL SOME PEOPLE TWITCH EVERY NOW AND THEN, AND OF COARSE THIS IS BENIGN, BUT EVERYDAY, HERE AND THERE ARMS, LEGS BACK ETC....NOT NORMAL AT ALL.YOUR NERVOUS SYSTEM HAS BEEN PUT INTO 5TH GEAR AND NEVER SLOWS UP...MAYBE IT SLOWS UP HERE AND THERE, BUT USUALLY ALWAYS TWITCHING.....BELIEVE ME IF THEY DO NOT START TRYING TO COME UP WITH A CURE FOR THIS IT WILL SPREAD RAPIDLY....PLEASE UNDERSTAND I HAVE HAD IT FOR 3 YRS MYSELF.....WITH ALL THE PRESERVATIVES CHEMICALS WE ARE EXPOSED TO WE WILL NEVER KNOW HOW WE GOT IT OR HOW TO CURE IT IF WE DONT GET TOGETHER AND START DEMANDING ANSWERS FROM THESE SO CALLED NEUROS WHO ACT LIKE THEY KNOW IT ALL...IF THAT IS THE CASE WHY HAVE I NOT READ ONE PERSON TELL YOU ABOUT CMFA...THE REAL NAME FOR THIS DISEASE THAT ATTACKS THE NERVOUS SYSTEM...GOOD LUCK AND FEEL FREE TO EMAIL ME AT [email protected]. I HAVE MUCH EXPERIENCE WITH THIS HORRIBLE DISEASE......GOOD LUCK
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Postby Brian_B on March 23rd, 2003, 1:58 am

if you go to a competent neurologist he/she should be able to tell the difference between the 2. The Mayo clinic study also shows BFS is real and with normal EMG and no weakness you can be almost for sure its BFS and nothing else.
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Postby Davidd on March 23rd, 2003, 7:16 pm

I did some research this weekend on "Continuous Muscle Fiber Activity Syndrome". SInce I had never heard of this before I thought that it would be worthwile looking into especially because I am always on the hunt for answers and when I hear new ideas my ears perk up!

Continuous Muscle Fiber Activity Syndrome appears to be a synonym for "Isaacs Syndrome". Isaacs Syndrome is a very rare disease from what I can tell. At first glance it did seem very similar to BFS but as I read more and more, there seemed to be more dis-similiarities than similarities. THis is a quote "Isaacs Syndrome is a peripheral motor neuron disorder characterized by muscular stiffness and cramping, particularly in the limbs. Continuous muscle movements (myokymia) can be seen. Musle relaxation may be difficult especially after physical activity involving the particular muscles. These symptoms persist even during sleep."

I don't fully understand the difference between myokymia and twitching but it seems like myokymia is more of a "wiggling" under the skin as opposed to a twitch. Either way, it seems that this is where the similarities between the two end. Symptoms of Isaacs include difficulty walking, staggering, stiffness and lack balance. If Isaacs is "focal" then the muscle reaction can be delayed...for example, after a person closes his/her eyes he or she may not be able to re-open them for a few seconds. Some other symptoms may include a bluish discoleration of the skin due to not enough oxygen getting around.

Anyway, I am no doctor and would love to hear some other facts and opinions about this. It just seems to me that the only thing that bfs and isaacs have in common is twitching...just like the only thing that bfs and als have in common is twitching.

That said, g007one--I would like to hear more about what you know about this disease because I found it hard to pull up a lot of facts about it on the internet. Thanks for sharing what you know and find.

--David
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Postby Arron on March 24th, 2003, 1:01 am

If this was a forum on headaches, and most everyone gets headaches every now and then, some even have chronic headaches but are still "benign" in nature, you are going to get a few people that come-in saying that they had a headache once and now they have a brain tumor. Does that mean every time someone gets a headache, everyone should worry about tumors? If it were that common you would be seeing commercials on TV to see your doctor if you have a headache instead of ALL of the plain old Tylenol, Excederin, Bayer, Norwich aspirin commercials for "daily" headaches.

What I am getting at is there are millions upon millions of people DAILY that get headaches. There are also hundreds of thousands of people that get migrane headaches or have chronic / acute headaches that have NOTHING to do with ANY disease or tumors or anything, BUT there are the small handfull of people that do get a headache one day and soon find-out it is a tumor. That is to be expected because it does happen.

With that, is it abnormal to have chronic or migrane headaches? I mean, there are millions of people that get them and there are even millions more that don't. Is that normal? Of course. Just like everyone twitches sooner or later in their lives. Some of us have developed the "migrane" scenario of twitches. It isn;t that common, just like migranes, but as with migranes, they are benign and have NOTHING to do with ANY disease... at least NOT a life threatening disease.

The reason hardly any of you haven't heard of "Muscle Fiber Activity Syndrome" is because it is very rare and isn;t even life threatening. hell, more peole die every year from tonsilectomy's that this "MFAS" stuff by 1,000 to 1, but if your kid needs his tonsils out, do you fear that he is going to die from the simple operation? Come-on now...

Isaak's Syndrome IS a disease just like ALS is a disease and yes, they both have twitching, just like BFS. So does MS in some incidences, usually in the later stages), but does that mean that al twitching is related to ALS, Isaak's Syndrome, MS or any of the other one's? Get real! I think that has been proven not to be true about a million times on this and many other HIGHLY RESPECTED forums, such as Med Help.org, The Mayo Clinic and just about EVERY other HIGHY RESPECTED neurology clinic in the world, so don;t go freaking out over what ONE person has come on here and blurted-out, no matter how unrelated to BFS it actually is. Isaak's Syndrome has NOTHING to do with BFS what so ever. MG also has twitching, but we haven't seen one single neuro say that BFS is even remotely related to MG, or ALS, or MS or Isaak's for that matter, so stay calm and take what was said by "007" with a grain of salt. Trust me, it ain;t my first day with this stuff and the doctor buddies I personally know, know the big wigs on the medical industry and they certainly aren't blowing smoke up our butts to keep us calm. BFS is REAL, and it IS BENIGN, period.
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WAKE UP

Postby g007one on March 24th, 2003, 7:30 am

LOOK, BFS IS WHAT YOU WANT TO KEEP BELIEVING THEN BELIEVE IT...IT IS NOT NORMAL TO TWITCH EVERYDAY, BELIEVE ME.....THERE IS SOMETHING WRONG AND THA TIS A FACT.....THERE IS NO DOCTOR THAT WILL TELL YOU 100 PERCENT THAT IT WILL NOT GET WORSE....ALL THE DOCS SAY THE SAME THING..CALL ME IF YOUR SYMPTOMS PERSIST OR YOU GET NEW ONES....BOTTOM LINE. I HAVE DONE LOTS OF RESEARCH AND I FEEL SOME GUYS ON HERE GIVE FALSE HOPE,AND THAT IS NOT FAIR....IF ANY ONE HAS QUESTIONS PLEASE EMAIL ME AT [email protected]...I HOPE WE ALL FIND AN ANSWER AND DO NOT ACCEPT BFS....BESIDES MANY NEUROS SAY WHAT THE HELL IS BFS.
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Postby DogBone on March 24th, 2003, 12:19 pm

If you do not believe in BFS, then I find it strange you registered on the AboutBFS site??? Also your comment (in all CAPS for some screwy reason) "THERE IS NO DOCTOR THAT WILL TELL YOU 100 PERCENT THAT IT WILL NOT GET WORSE" Hello -- Anyone on our site does not need a doctor to tell us that. Also, the mayo study that first identified BFS, yes only the top neurology clinic in the world, said that many of their BFS patients were worse after seven years of follow up. We all understand that our BFS can get worse, but most often gets better. Also, try going to the Cleveland Clinic website and search for twitches -- what do they call it when it is not ALS twitching? -- BFS is all over their website. BTW - I do not remember seeing CFMA. Also, I had three neuros tell me about BFS, and all of them knew exactly what it was. Not a single one mentioned CFMA?? I wonder why?? Your post is ridiculous, all that garbage about false hope -- you do not know what you are talking about. Would you rather we sit and waste our lives worrying about another disease?? Although, after the scares we have gone through on this site, Isaacs is a cake walk. What is your goal here? I think that it is good to mention possibilities of other diseases because we welcome new research. But, to come in here and tell us that BFS does not exist is uneducated and naive.
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Postby Arron on March 24th, 2003, 1:00 pm

Like I said, it is not normal to get "chronic" headaches either, but some people do. EVERYONE gets headaches and only a handfull of people get chronic headaches but does that mean they will end-up with a brain tumor or brain cancer later-on? No way! get real 007!

Sure, ANYONE can get worse and we ALL do get worse as life goes-on. We get Arthritis, Cancer, Osteoperosis, baldness, lose our teeth and how many other things WILL happen? BUT, there are people that have had BFS for decades and have NO progression at all, AND there has not been ONE SINGLE PERSON on ANY of these forums that has gone on to develope anything worse than maybe more fatigue or more constant twitches, so BIG DEAL!

We realize constant twitching isn't "normal" Einstein! That's why we are here, BUT that certainly doesn't mean anyone with BFS has what you and your quack doctors call CFMA. Isaak's is SO rare and it is NOT like threatening at all. So what do you want people to do on here, worry that they "might" twitch even more? Ooohh... scarrryyy! The ONLY reason anyone is on this forum is because they were misled to believe that they might havd ALS, which IS a reason to worry until you LEARN that BFS twitches are TOTALLY different than ANY ALS twitches and they are TOTALLY un-related.

So the Mayo clinic and ALL of the other neurological clinics around the world are full of liars and neuro' that don't know what they are talking about? Yeah right. We are listening to a moron that can't even undo his cap locks key! Get a life moron. No one wants or needs idiots like you here. Tell your quack doctor to READ his JAMA books from now on and take your dumb assed (incorrect) opinions and get outta here!
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TO AARON

Postby g007one on March 25th, 2003, 9:21 am

LOOK PAL, YOU ARE WAY OUT OF LINE ATTACKING ME, I AM SHARING FACTS AND INFORMATION I HAVE GATHERED...PLEASE DO NOT TRY TO ATTACK ME WITH THESE WORDS OF GUTTER..I HAVE LOTS OF EXPERIENCE IN THIS DREADED DISEASE, AND THAT IS WHAT IT IS.....DO NOT POST A MESSAGE TO ME ......I KNOW FOR A FACT MANY PEOPLE ARE TRYING TO FIND A CURE, SO ANY IN PUT THEY CAN GET CAN HELP....I GET LOTS OF EMAILS FROM PEOPLE HERE AND THEY WANT TO KNOW FACTS NOT GUESSES..BFS OR CFMA....WHO CARES JUST A NAME..I AM JUST TRYING TO GET MORE RESEARCH DONE ON THIS DISEASE OR SYNDROME, WHATEVER SOMEONE MAY CALL IT....PLEASE DO NOT BE MAD AT ME...I AM NOT TRYING TO SCARE ANYONE...I JUST HAVE HAD SOME VISITS TO DOCTORS AND THEY ALL SAY STRESS...LEARN HOW TO RELAX...ETC...I DONT BUY THAT AND CONTINUE TO SEARCH FOR AN ANSWER..LETS ALL WORK TOGETHER AND BE HAPPY...SORRY ABOUT BEING TO DIRECT ABOUT THIS INFORMATION....I DO APOLOGIZE...GOD BLESS EVERYONE HERE, AND I WILL CONTINUE TO LOOK FOR AN ANSWER..
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Postby DogBone on March 25th, 2003, 10:50 am

Thanks for the explanation. Sorry we were a bit harsh.

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