Another perspective..

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Re: Another perspective..

Postby Arron on February 25th, 2009, 9:24 pm

:lol: See anyone on this site or any other site where they discuss BFS come back and say they have lung cancer? See ANY studies by the mayo Clinic (including that LONG study they did for over 7 years last year) say ANYTHING about ANYONE with BFS getting lung cancer?

I've had this stuff for almost 10 years now.. no cancer... and EVERYONE I know that has had it for MANY years has no cancer. It's just more crap that dumb asses spread around that poor people believe because they are just LOOKING for something to make this all dooms day. My god, what's it going to take to make everyone understand that BFS is freakin BENIGN!!!! :roll:

Next, some idiot will be spreading bogus statements around that people who have migrane headaches get diebetes after 4 years. Well? Migranes are about as random as BFS and about as UN related to diabetes as BFS is to lung cancer.

Quit LOOKING for stuff on BFS. There isn't going to be any new information on it, I can guarantee that. We've been following it WAY too long to find out anything we don't already know (other than the actual cause and/or cure). Other than that, we sure as hell aren't going to be finding out that people with BFS after 4 years get lung cancer.

A rash can be a precurser to cancer in the body as well, so can Thrush and many other common immune related symptoms, but do any of you freak out every time you get a heat rash, thrush or a canker sore? I'll bet that answer is no.

You hold the cure to BFS in your own head. You also hold your own nightmares. If you go looking for dooms day, some ass hole will be glad to "create it" for you. There are LOTS of ass holes on the internet if you go looking for them and the CRAP they post. Isn't there enough doom and gloom going on in the world than for you to go looking for more? Take the info we have already (the REAL info that I, Gary M and other long time "experts" have compiled) and use that to help you get over your fears instead of looking for new posts. Doctors contact us for information on BFS. Does that tell you anything? Doctors also come on this web site for information on BFS. Does that say anything about the validity of the info we have compiled over the past 10 years? As I said, there is going to be no new information other than what we already have in "BFS in a Nutshell" or in the post titled "Why you don't have ALS I & II".

Quit freaking yourself out over something that's benign. That's as crazy as freaking out that you have a brain tumor every time you get a simple headache. How many people do you know that get occasional headaches? Now how many people do you know that actually have a brain tumor? Is it really justified to worry about having a brain tumor every time you get a simple headache? NO! Is it justified to worry about BFS when we KNOW it is benign? NO! So quit looking for something out there to prove us wrong or to find new related symptoms / causes / related diseases claimed to be caused by "twitching" or BFS. This ain't our first rodeo, and the Mayo Clinic backs EVERYTHING we have said all along 100%. It doesn't get any more clear than that. if we had found that BFS'ers (even a small percentage of them) got lung cancer, and we were able to link their cancer to the BFS, we'd certainly have warnings for people to go get annual lung check ups and cancer screenings done. We don't have anything like that on here because there is no such thing to even point us in that direction.

There are LOTS of odd little symptoms that certain cancers causea body to do, and there are also cancers that get to stage 4 before you even notice a symptom. BFS is NOT one of the symptoms and "twitching" isn't either. PN MIGHT have some relationships on SOME cancers, but not all, and certainly not in every patient. Everyone reacts differently. For every person you hear about that found colon or liver cancer early, you'll hear about someone else that had ZERO symptoms and died 2 weeks after they found out it was at stage 3 or 4. Also, EVERYONE gets PN (pins and needles, temporary numbness, tingling, etc.) from time to time. It is NORMAL. Not everyone is 100% perfect all day, every day, year after year. Just remember that.... BFS is BENIGN and it's OK to twitch. EVERYONE twitches throughout their life. Some more than other, and other's more than most. Either way if there is no underlying disease (such as ALS), then it's benign, end of story.
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Re: Another perspective..

Postby Boo Boo on February 25th, 2009, 9:44 pm

Thanks Arron for a great post.

Now, could you PLEASE ease my mind a bit?? :oops:

So I had a clean EMG for my limbs. Now I'm having trouble not thinking my tongue is getting too big for my mouth or that I just slurred the word "suggestion" when talking to my husband. I burnt my tongue yesterday on a very hot piece of pizza so it feels even more sensitive today. I've been performing tongue strength tests - I think someone else mentioned they were doing this too (Mendota?) Anyway, I've been performing strength tests all day long. It's insane! I don't buy into the cancer stuff nor does cancer scare me. Degenerative diseases are my devil's workshop. Were you a BFSer that went thru any scare that made you think the worst? Did you have an EMG? Do you have any further advice for the anxious folks that think they are presenting bulbar symptoms?? I get a random facial twitch here and there and can't seem to not focus on it. I was doing so great after my clean EMG. Incidently, did you know that EMGs done on your hands and arms don't detect upper motor neuron diseases?? Do you know their purpose?

Rambling. You'll probably tell me to re-read your post..
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Re: Another perspective..

Postby Slavin Balen on February 26th, 2009, 12:47 am

it feels even more sensitive today

No sensory feelings for NMD!
Arron,
You are one of the reason why I stay so long on this site. I think you have a great experience as well as a sort of humor.
Thank you for all during my last five years of BFS (my 5th Anniversary on 1st of March).
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Re: Another perspective..

Postby nervousguy1 on February 26th, 2009, 2:37 am

Arron wrote::lol: See anyone on this site or any other site where they discuss BFS come back and say they have lung cancer? See ANY studies by the mayo Clinic (including that LONG study they did for over 7 years last year) say ANYTHING about ANYONE with BFS getting lung cancer?

I've had this stuff for almost 10 years now.. no cancer... and EVERYONE I know that has had it for MANY years has no cancer. It's just more crap that dumb asses spread around that poor people believe because they are just LOOKING for something to make this all dooms day. My god, what's it going to take to make everyone understand that BFS is freakin BENIGN!!!! :roll:

Next, some idiot will be spreading bogus statements around that people who have migrane headaches get diebetes after 4 years. Well? Migranes are about as random as BFS and about as UN related to diabetes as BFS is to lung cancer.

Quit LOOKING for stuff on BFS. There isn't going to be any new information on it, I can guarantee that. We've been following it WAY too long to find out anything we don't already know (other than the actual cause and/or cure). Other than that, we sure as hell aren't going to be finding out that people with BFS after 4 years get lung cancer.

A rash can be a precurser to cancer in the body as well, so can Thrush and many other common immune related symptoms, but do any of you freak out every time you get a heat rash, thrush or a canker sore? I'll bet that answer is no.

You hold the cure to BFS in your own head. You also hold your own nightmares. If you go looking for dooms day, some ass hole will be glad to "create it" for you. There are LOTS of ass holes on the internet if you go looking for them and the CRAP they post. Isn't there enough doom and gloom going on in the world than for you to go looking for more? Take the info we have already (the REAL info that I, Gary M and other long time "experts" have compiled) and use that to help you get over your fears instead of looking for new posts. Doctors contact us for information on BFS. Does that tell you anything? Doctors also come on this web site for information on BFS. Does that say anything about the validity of the info we have compiled over the past 10 years? As I said, there is going to be no new information other than what we already have in "BFS in a Nutshell" or in the post titled "Why you don't have ALS I & II".

Quit freaking yourself out over something that's benign. That's as crazy as freaking out that you have a brain tumor every time you get a simple headache. How many people do you know that get occasional headaches? Now how many people do you know that actually have a brain tumor? Is it really justified to worry about having a brain tumor every time you get a simple headache? NO! Is it justified to worry about BFS when we KNOW it is benign? NO! So quit looking for something out there to prove us wrong or to find new related symptoms / causes / related diseases claimed to be caused by "twitching" or BFS. This ain't our first rodeo, and the Mayo Clinic backs EVERYTHING we have said all along 100%. It doesn't get any more clear than that. if we had found that BFS'ers (even a small percentage of them) got lung cancer, and we were able to link their cancer to the BFS, we'd certainly have warnings for people to go get annual lung check ups and cancer screenings done. We don't have anything like that on here because there is no such thing to even point us in that direction.

There are LOTS of odd little symptoms that certain cancers causea body to do, and there are also cancers that get to stage 4 before you even notice a symptom. BFS is NOT one of the symptoms and "twitching" isn't either. PN MIGHT have some relationships on SOME cancers, but not all, and certainly not in every patient. Everyone reacts differently. For every person you hear about that found colon or liver cancer early, you'll hear about someone else that had ZERO symptoms and died 2 weeks after they found out it was at stage 3 or 4. Also, EVERYONE gets PN (pins and needles, temporary numbness, tingling, etc.) from time to time. It is NORMAL. Not everyone is 100% perfect all day, every day, year after year. Just remember that.... BFS is BENIGN and it's OK to twitch. EVERYONE twitches throughout their life. Some more than other, and other's more than most. Either way if there is no underlying disease (such as ALS), then it's benign, end of story.



Arron, you seem to kick me right under the butt whenever i need it. Thanks! :mrgreen:
Links of interest :

Why you don't have ALS part 1
viewtopic.php?f=3&t=11435&p=81906#p81906

Why you don't have ALS part 2 :
viewtopic.php?f=5&t=11434

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Re: Another perspective..

Postby LaurentCH on February 26th, 2009, 2:39 am

Yeah its quite known that neuromyotonia (sorry if its not in english) is often paraneoplastic, thats why I asked my doc to check tumourmarkers in my first bloodtests. Fortunately it is real nerve damage and can be seen on EMG.
BTW nervousguy1 - I dont really mean it, but you were strictly against "scary" topics about ALS / BFS and now you are posting to public that twitching can precede cancer?! Hypocrisy :D


blizna, what is seen in the emg? neuromyotonia?
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