So I had an idea to help people here...

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Re: So I had an idea to help people here...

Postby BFSBurger on January 15th, 2014, 12:34 am

J4son wrote:Most people here do not discuss how to manage annoying symptoms like on a fibromyalgia or on a chronic pain or a rheumatism forum, but how to get rid of their extreme fear of getting ALS.


This is true, and its a frustration I have expressed many times. There are a subset of people here who are seeking answers and trying different techniques, but its almost like they are scoffed at and insulted for doing so, which is just plain twilight zone sh*t in my opinion. Never seen such a thing on a health forum before in my life. Every other forum, including the one I run, people are brainstorming ideas and solutions, and are *open* to thought experiments and trying new things. Why? Well ... because they want to feel better.

-BFSB-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: So I had an idea to help people here...

Postby Yuliasir on January 15th, 2014, 1:44 am

Burger,
I think you mess up two different things - "trying different techniques' and asking questions which were answered several times by world level neurologists. This is first I would like to note.
Another one issue is that I think in that point Jason4 is not quite right: people on that forum does not only moan or ask same questions. Passing this inevitable phase, they (most of them) start to act: change schedule, go to psychotherapy, do youga, excersise, try varuous other means to regain physical and mental health. Looks like common sense brainstorming was already done for BFS, and I personally feel myself happy that it does not involve such bizarre ideas, like, for example, oral kerosene therapy or home-made tinctures of dangerous herbs (real examples of what such common sence brainsotrming may produce for other disorders).

Jason4,
Yes we are forum of people with mostly clearly manifesting anxiety and obsessive disorders plus somatic manifestation. So what? Experience shows that after getting the fears calmed down, somatic presentations vanich or become background noise. I think there is nothing strange that mostly we discuss the ways to fight the fears and get our main disorder (mood one) to calm down.
Small percentage of our fellows is virtually free of A/O component, so they may be annoyed becasue noting is more annoying than internal life of anxious or obsessive wreck to one who had never suffered it (and even ot the other sufferers to be honest).
But we still talk about what to do with muscle pains, how to survive joint clicking and pain, what to do with sleepy hands and what is the best way to see if you do not have other more or less curable diseases like SFN for example.
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Re: So I had an idea to help people here...

Postby johnnythejet on January 15th, 2014, 2:03 am

BFSBurger wrote:
J4son wrote:Most people here do not discuss how to manage annoying symptoms like on a fibromyalgia or on a chronic pain or a rheumatism forum, but how to get rid of their extreme fear of getting ALS.


This is true, and its a frustration I have expressed many times. There are a subset of people here who are seeking answers and trying different techniques, but its almost like they are scoffed at and insulted for doing so, which is just plain twilight zone sh*t in my opinion. Never seen such a thing on a health forum before in my life.


Burg- Yes, its true that this site predominately serves as a safe place to get good information about BFS, specifically how BFS differs from ALS, and to save people's sanity from the extreme and irrational ALS fears. The topics about symptom management are minimal in comparison because BFS is different than other conditions like Fibro, chronic pain, etc. The difference lies in the type and severity of symptoms. For the majority of BFS cases, the symptoms represent little more than a minor annoyance. This is especially the case once we get past the initial ALS freak-out stage (first year or two). Over 4 thousand people have been through this community, yet there are barely a select few old timers who still hang around (and even those few are only around to help and not to cope with BFS). Why is it that nobody is around to discuss techniques? Is that because they were scoffed at and insulted? Didn't like being in this twilight zone? lol The simple truth is those thousands moved away from the forum because there's no reason to stay. For most cases, the symptoms don't negatively impact their daily lives in any way, shape, or form. Life is short, and people don't like wasting hours obsessing over a benign condition that's little more than an annoyance. Its unfortunate that you view disagreements or even simple lack of response as "scoffs" and "insults", but that's just your means of coping I guess. Its been well documented similar to your above mentioned frustrations.
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Re: So I had an idea to help people here...

Postby Xina535 on January 17th, 2014, 1:22 pm

J4son wrote:- None here among the thousands of people on this forum whom were given a diagnosis of benign twitching developed ALS.



New member here - I've seen this a few times, a statement that no one on this forum has ALS. I've wondered if that's really true, or how that is known. Maybe it's explained on here somewhere and I've missed it.
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Re: So I had an idea to help people here...

Postby Yuliasir on January 17th, 2014, 2:19 pm

Xina,
as far as I know, our moderators and several of avtice members keep in touch with the significant amount of fellows. Of course some of them had vanished somwhere in the Net I suppose, but we have quite a lot of oldtimers coming to check in and say Hi I an 3,5,10 or more years in and still Ok. As for several members (of 4000) having been diagnosed with ALS, one confessed recently that he was saying that purposedly parlty believeing he really has it, while in fact he had serious obsessive disorder, another one had diagnose dismissed in the top national ALS clinics, and yet another member most probably has slow developing MND but not ALS per se.

As for vast majority of members, their typical picture allows to say that they are most probably our fellow BFSers, even if the post a few times and never come back (especially becasue they never come back I think)

hope this would help a bit.
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Re: So I had an idea to help people here...

Postby Xina535 on January 17th, 2014, 3:18 pm

Yes this helps! Much appreciated! I was just wondering if there was a feature on here that I missed. I've seen on other forums that there is a piece of their profile says if they have A**, so I thought that could be where that statement comes from on this site, but didn't see it on here.
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Re: So I had an idea to help people here...

Postby MarioMangler on January 17th, 2014, 3:57 pm

There are a couple of well documented cases from way back in the archives where people claimed they had ALS. But it turned out later that they either 1) self diagnosed themselves and claimed it was true even though no doctor ever agreed with them, or 2) were just doing it because they wanted the attention and they wanted people to read their posts. Other than that, this is pretty much more a health anxiety board than anything. Nobody here really has anything seriously wrong with them. Just hang around this place long enough and you will see the obvious pattern start to develop.

One of the perceptions that has always seemed to be floating around this board is that some of us have BFS, and some of us have ALS. That is the perception that nearly every one of the newbies (myself included) have when they come to this board. They believe that there are "good" twitches, and there are "bad" twitches. And ohpleaseohpleaseohplease let me be a part of the good group.

See, I have been around here long enough that nearly every newbie just read that paragraph and is now nodding their head. Yep that is you. I know it is you. That is -every- newbie that comes to this board. They come here thinking that some of us are okay, and some of us are doomed, and they really are just hoping to find the evidence that they aren't in the doomed group.

But here is a little secret. None of us are doomed. There is no such thing as a "bad" twitch. The only things that are bad are the things that come -with- twitches, and none of those have those. Any doctor who takes a look at you can tell you this. So you are twitching? Every day? Well did your hand stop working a month ago and you can't move it anymore? Has your leg been a useless piece of rubber that is paralyzed and you haven't been able move for more than 3 weeks? No? Well then you have twitches. You have benign twitches, same as everyone else who has ever had BFS. Thank you, and don't call for a follow up until something about that changes.

Yet people persist. They still do believe that there is such a thing as "bad" twitches. You will see it in every single page on this board. You will always see it on every single page on this board. You have seen it on every single page on this board for more than ten years. People who are convinced that some of us are okay, and some of us are doomed, and they are just clinging to this obsession that they have to do everything in their power to make sure they are in the okay group.

The minute I finally came to grips with BFS (years ago) was the day that I finally realized the true nature of this board. It was when I realized that this board is NOT made up of people in both camps (BFS and ALS). No one here has ALS. No one here has anything close to ALS. If you had something that was even remotely in the same ballpark or even in the same chapter in the textbook as ALS, you wouldn't be here. You would be worried about more important things in life other than "OMG what kind of twitch is this? Is it the good or the bad?????"

In the end, this is basically an obsession and health anxiety board. That is all that it is. It is people worried about something they don't even have any symptoms of. It is people paying money for tests and visits and EMGs that they don't even need. And then doubting the test that they didn't even need in the first place. Sound familiar? Well welcome to BFS. We have all been there before.

Once you realize the true nature of your problem (obsession, self testing, OCD, health anxiety), then you will finally realize how silly this whole BFS obsession really is. And you will finally start to move away from it. But the very first thing that has to happen is you have to end this entire nonsense of "is this the good kind of twitch or the bad kind of twitch." There is no one here that is doomed and is just waiting for the hammer to fall. It hasn't happened before, and no one here is special enough to be the first. I know that we all think we are special little unique snowflakes in the world, but we really aren't.

BFS is just that. It is BFS. It sucks, but there are ways to deal with it.
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: So I had an idea to help people here...

Postby veryworried123 on January 17th, 2014, 8:14 pm

Mario is the man
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Re: So I had an idea to help people here...

Postby Gamindsoc1509 on January 17th, 2014, 11:51 pm

I have done a fair bit of deep diving back into the forums and found only 1 person with ALS and one person suspected. I'd like to point out however that BOTH were seen as suspicious upon first visit with neurologist and both had EMG issues. Very different from the BFS profile.

This all occured from their first visits.
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Re: So I had an idea to help people here...

Postby Yuliasir on January 18th, 2014, 12:06 am

Nobody here really has anything seriously wrong with them.


Except acute or chronic GAD or OCD. Sometimes it may go away with the timne, but for many of us it is a recurrent condition, a medical condition itself, needing attention and treatment (as we can see on the example of the gentlemen who was insiting he has ALS while he hed not - OCD pressed on him so hard that he was crushed). People loose jobs, friends, families, so yes, OCD seldom kills, but it turns life in a real real hell.

People here often look for relief of twitches, however forgot that twitches are secondary to stress, wrong diet, to the life itself... Sowe have to make our life better, and I think this is serious task :)))
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Re: So I had an idea to help people here...

Postby johnnythejet on January 18th, 2014, 12:10 am

Nobody here with BFS has ever developed ALS. This is true based on hundreds of people hanging around these forums for months/years, and hundreds of others that stop by years after leaving to check in. Most of these check-in posts are hard to find because they're buried in random places over the course of 10+ years. That's why only old timers have an accurate view of the long term situation. However, just because this is a BFS forum doesn't mean that a non-BFSer or even someone with ALS can't accidentally land in our community. That has happened before and it was very obvious from the beginning that person was dealing with something other than BFS. Like Mario said, eventually once you examine the evidence long enough the picture becomes clear. We're all a bunch of benign twitchers.
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Re: So I had an idea to help people here...

Postby MarioMangler on January 18th, 2014, 12:48 am

Yuliasir wrote:
Nobody here really has anything seriously wrong with them.


Except acute or chronic GAD or OCD.




Ah. Yes I guess I assumed that part was implied. We all have some sort of OCD or GAD tendencies. That part should be obvious to anyone who spends more than 30 minutes with us.
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: So I had an idea to help people here...

Postby Yuliasir on January 18th, 2014, 1:58 am

yeee, Mario, I just meant that OCD/GAD is a serious thing too but other than MND :) Fortunately seldom fatal. Definitely not like ALS :)
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Re: So I had an idea to help people here...

Postby veryworried123 on January 18th, 2014, 2:17 am

Question I see others and myself have been wondering about

Have we ever had people who had bfs and then were later diagnosed with another Nero or muscle diease?

Thanks
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Re: So I had an idea to help people here...

Postby Xina535 on January 19th, 2014, 4:54 am

MarioMangler wrote:
See, I have been around here long enough that nearly every newbie just read that paragraph and is now nodding their head. Yep that is you. I know it is you. That is -every- newbie that comes to this board. They come here thinking that some of us are okay, and some of us are doomed, and they really are just hoping to find the evidence that they aren't in the doomed group.


I'm guilty! Also guilty of waiting for the hammer to fall and coming here to re-read statements and post to try to help convince me that I'm OK. For me personally, I'm in the "diagnosed with BFS, but no tests yet done after being diagnosed and having freaky and freightening symptoms" stage. So obviously this board is very important to me, especially because no one in my real life has any clue about what I'm dealing with. I wonder how many BFSers know another BFSer in real life that they can go to for support. BFS Anonymous - might be an idea to start local support/meet groups.

Currently, I appreciate all feedback in here. I see each post as a little pearl. I may not need to come here after awhile, but for now it's been an ENORMOUS help!

I didn't mean for the senior members to go back to the archives to look up any true A** cases, I was just wondering if that was something being tracked on here. Thanks for checking into it!
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Re: So I had an idea to help people here...

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