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Postby leaflea on November 5th, 2014, 11:27 am

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Last edited by leaflea on November 5th, 2014, 5:47 pm, edited 2 times in total.
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Re: Clearing the air on paraneoplastic syndrome

Postby mwagner on November 5th, 2014, 1:51 pm

I am not sure where you're getting those numbers -- I think they're quite a bit lower. And PNH isn't necessarily what we have. They often describe sensory polyneuropathies. I don't think that's what we're dealing with.

But, your points are very good -- nothing paraneoplastic has been reported on this forum. It's just another thing that we accidentally google and run across and get afraid of!! If google didn't exist, we'd never even know about it.
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Re: Clearing the air on paraneoplastic syndrome

Postby Pascal35 on November 5th, 2014, 3:33 pm

OK - Some people have mentioned (including myself) that they twitch more when they are tired or haven't slept much or after drinking alcohol. This basically means that twitching appears when the immune system gets weaker... So what do we get out of this theory...?
There are so many diseases out there... Our mind could blow if we have to worry about every single one of them.
Its like when you cough. It could be lung cancer, ebola, flu or simply nothing. We have to stop reading articles that we are not really experts to fully understand and analyze
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Re: Clearing the air on paraneoplastic syndrome

Postby leaflea on November 5th, 2014, 3:37 pm

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Last edited by leaflea on November 5th, 2014, 5:46 pm, edited 1 time in total.
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Re: Clearing the air on paraneoplastic syndrome

Postby MarioMangler on November 5th, 2014, 4:45 pm

leaflea wrote:I know this won't be a very popular or pleasant subject, but I assume most of us know about this. Yet, it is rarely mentioned here.



I wouldn't say this is rarely mentioned here. Arron Johnson himself used to show up and go on a rant about this very subject at least two or three times every year because it would always come up and freak everyone out. In fact let me go find some of his more memorable rants and repost them. Needless to say, no this is not a rarely mentioned subject around here. :D
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Clearing the air on paraneoplastic syndrome

Postby MarioMangler on November 5th, 2014, 4:51 pm

Check out this thread from 2009 where the subject of paraneoplastic syndrome came up and watch how infuriated Arron gets that people are still going on about this. In fact I will just cut and paste his response here since stuff like these needs to be posted a lot more around this place these days:

viewtopic.php?f=5&t=13099





Arron's response:

: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.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: Clearing the air on paraneoplastic syndrome

Postby leaflea on November 5th, 2014, 5:35 pm

Well, now there was a rant. Say what you will about bfsers, but they are smarter than the average bear. The info about it (PNH articles) are pretty scholarly, more so than the rant. The last post I'd seen mentioning it other than my own musings were in 2013 and then just barely. For the record, I don't think the anger was justified...headaches aren't rare, rashes aren't rare...and we know much more about those things. Twitching isn't rare either, but the full blown bfs, PNH seems to be. It is human nature to look for answers about something that is life altering. And, for the record, I want to underscore that our experience does not match what is said in other sources - that is a wonderful thing. Our collective experience is worth a lot and if those doctors and researchers do come to us for information, I think this is an important piece of evidence to mention. I am most interested in starting a conversation/discussion about why this does not fit our experience and how are we different. Not trying to stir anything up AT ALL, pointing out that NO ONE has had this despite scholarly articles indicating it would not be rare with the bfs population. I just hate how people go off if anything the unpleasant or mysterious is mentioned. Keep it real and authentic or just keep it period. Or, we could just talk about unmentionable twitches instead.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: v

Postby MarioMangler on November 5th, 2014, 10:56 pm

You didn't have to delete your post, that wasn't directed at you. I just thought it would be funny to dig up one of Arron's old rants. This was his least favorite topic because it would show up every three months or so and rile everyone up, so he had to lay down the smack.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: v

Postby mwagner on November 6th, 2014, 1:08 pm

I agree - no need to remove the post... having been on here for 3 years, this topic has come up multiple times and usually put to rest.

The point, I'd like to drive in is that I truly don't believe PNH and BFS are the same. I do think Isaac's Syndrome/Neuromyotonia and PNH are the same. And, I don't think the majority of us have that. The same topic has come up for autoimmune conditions, because PNH is related to them as well. In one paper I read, there have to be certain EMG results to distinguish a person having neuromyotonia, and of course then they look for those VKCG antibodies (or whatever - I'm trying to remember off the top of my head).

That being said there is a relationship between cancer and neurological issues - but plain ole twitching isn't one that is commonly associated with it. It's like muscle weakness, and other neurological issues that are more related. And even with those, I read somewhere (during my freakout period over this) that only like a teeny percentage of lung cancer patients have any paraneoplastic symptoms.
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