Confused Over BFS & CFMA?

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reneecatx

Well-known member
I'm a little confused over your post about BFS being CFMA? When you say it will spread rapidly what are you saying?....rapidly throughout our bodies or rapidly through the population? Maybe we all just have a chonic illness we just have to cope with part or the rest of our lives. Do you believe this condition will shorten our lifespan? My neuro says no. There are lots of illnesses out there like chronic fatigue, fibromylagia, ebstein Barr that people just live with. It doesn't make them die sooner. I've also read that BFS is a cousin to fibromyalgia. There are people that have had BFS and all the symptoms disappeared. Miracles do happen(Stephen Hawkings, Christopher Reeves) I'm not saying we need a miracle for this to stop but maybe for some of us it will just play itself out like a virus. I believe the neurologist's are going to pin this thing down soon. He said the nervous system is the most difficult system of the body and that's why answers come slowly.
My doc said(Issac's syndrome) is a different condition than BFS.

Just my opinion,
Renee :)
 
Renee, don't even bother replying to that idiot. he is a moron that is trying to scare everyone on here with his quackery opinions.

If BFS spreads rapidly like this moron says, then show me ONE person that has died or even ended up in a wheel chair from it. You can't because there is NO ONE like that.

People also live with things like Osteoperosis and Arthritis, but do they die from it? Hardly. Has ANYONE came back to ANY of these sites and said they can no longer type because their twitches are so bad, they can't contriol their fingers? No way! Even if there is never a cure or they never find a cause for BFS, who cares? It is ONLY scary to people when they first find-out (misinformation) that twitches can be ALS. But, we have also been educated enough to understand and pass along our knowledge to other's that ALS and BFS are COMPLETELY different and have absolutely NOITHING to do with each other what so ever!

You hit the nail on the head by questioning 007, but don't waste your breath on people like that. They like using scare tactics to make other people feel unsafe. He's probably a jobless, toothless, trailer park living, part time 7-11 counter person that has had a few too many Coors Lights in his day, so just ignore him and try not to let people like that scare you. I just laugh at idiots like that :LOL:
 
I kinda figured that post was intended to scare some people around here...I'm not sure the thread had been removed but I actually posted a response in which I tried to say that Isaacs and BFS have nothing in common but twitching. Sometimes it's hard to tell if someone is serious or not when they write msgs but I guess I wasn't 100% sure with g007. Anyway, now that it's been put into perspective, I'm sorry that I even wrote back...that said, it didnt hurt for me to get a little extra knowledge regarding some rare disease that I had never even heard of!!

--David
 
well if BFS isnt real as he said, then how come 2 respected medical centers, Cleveland Clinic and Mayo Clinic both have studied on BFS?

your average GP doctor might know about BFS(mine didnt) but a qualified neurologist should know about it(which the one I went to did). He didnt specifically say yes its BFS but he said its nothing serious, we dont know for sure why people twitch but its nothing to be concerned about with no weakness or atrophy.

he did think it would be heriditary(my dad has is) as well as could be from chemicals my dad mightve been exposed to in Vietnam and then passed on to me.
 
I think you folks are being a bit hard on the guy. His presentation was down right poor, but I do not think he intended to scare us. We want to be careful lashing out at others who bring us more information or we may stop getting it.

Just my 2 cents.

RareAir
 
RareAir, it's not "what" 007 said, it's "how" he said it.

"YOU are going to die" antics. "It's a terrible disease that runs rampant very quickly throughout your body" kind of crap. "My doctor told me so"... and so on. Well, obviously his doctor is as much of an idiot as he is!

No one on here needs to hear false garbage like that and stirr-up people's fears just when they were starting to calm down. I take that as a hostile post and I meet hostility WITH hostility. It's the only language those kind of people understand. It was definately meant to be little us and our extensive (cumulative) knowledge on BFS and to stirr-up people's fears. It certainly wasn't meant to "inform" us of some new found information... Not the way it was presented anyway.
 
007, your name must be your IQ status, your grammar is that of a third grader, (actually my daughter is in third grade and has better grammar and spelling than you), you have no clue what the hell you are talking about and you STILL can't find your "caps lock" key!

No ONE said constant twitchig was "normal". Show me ANYWHERE where someone has said that BFS is "normal". We have said it is BENIGN! There is a HUGE difference between what "normal" and "benign" means, and obviously you don't know the meaning of either.

There is power in numbers and even more power in "cumulative knowledge". THAT is how research get's done, by MANY doctors doing research and MANY people participating in studies, NOT by some brainless moron that comes-on here spewing false information about what HIS quack doctor said BFS was.

Do you really think that YOUR one single doctor knows more than the cumulative knowledge of the top neurologists from around the world and ALL of our experiences and cumulative information we have gathered and compiled?? Yeah right!

It's funny how ALL of the neuro's from the world's TOP Nurology center's ALL say the same thing, that BFS is a REAL "condition" and that it is BENIGN. They NEVER said it was "normal"... only that is was BENIGN. Who the hell cares what YOUR brainless doctor says? You say you are just giving facts? I've got a fact for you. It's a fact that you and your doctor are IDIOTS!

By the way... I'm not god at all and I don't play god. I only seem like a god to mindless little people like yourself. I guess to people like you, ANYONE would seem like a god! Get a life!
 
007

You are being a bit ridiculous don't you think. What do expect us to do? You want us to REFUSE to live with BFS. Well - the reason most docs do not spend all their time on BFS is because it is BENIGN. You want us to call our docs and ask them to leave their ALS, MS, and this list goes on for miles -- to solve a benign condition. Don't you think it is better if Aaron or anyone else can help us cope with this disease mentally? I, for one think it is much more healthy for us to learn to cope, rather than make it our life-long battle to figure out BFS. I would rather see research time and energy go to ALS, cancer, and the likes.

Most of us are scared about ALS, do not really care about BFS, I do not care if I twitch, it is just when I think about ALS that I get all worked up. So I appreciate those on this site boosting me and others up mentally, because not many here would argue, that is our main problem. Not the twitches.

I think what you are doing is good and appreciate your research. However, I think you are forgetting or just do not realize that most of us here suffer mentally from fear, MUCH MUCH more than from the twitches. And I dare say that is the case for you as well.

RareAir
 
:mad: 007 I have NEVER claimed to be a know-it-all by any means and I am offended that you attacked me and the other wonderful people on this site. We are a support group here, not a research center. Dont get me wrong we love to hear about new data and ideas but when you present them the way you do it sounds like we are all freaks that are going to die from a horrible disease that will rob us from our lives. That is not true, I am living my life, I feel fine, so what I twitch sometimes! But I am normal and I have no weakness, no atrophy, nothing but some minor twitches. I also have acid reflux disease, is it normal for a 27 year old to have that, not really but I do and you know what I manage it, life goes on! Same thing with the twitches. I am not sure what you are trying to do here. Do you want to to scare people, make them feel like something is terribly wrong and that they are going to die?? Do you want to save us all from the horrid disease that is BFS? I dont think so! There are long time BFSers that are doing great and have not progressed. I am on Aaron side with this one, he may be harsh at times, but he is a good guy with good intentions, he puts many minds at ease and it is not false hope, no one has ever died from BFS! I have not progressed, I have gotten 100% better. You need to think before you attack others, there are already to many problems in the world lets let this site be a safe haven for us all.
 

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