Truth about als

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Truth about als

Postby german on November 23rd, 2013, 5:01 pm

The truth is that all you guys on here don't have als. I know, that stament makes me sound like a "know it all" and maybe even makes me seem insensitive or arrogant, but those that know me can verify i'm none of the above. I say this because in spite of all the symptoms, fear, waiting and torture. The most common denominators within our special little demographic reveal 3 things.
1. Though this crap can take a while to get better and can often hang around like "luggage", no one is dying from it. Yes, We've all heard stories of instances where something turned up ( none that I know of that were verifiable). And maybe someone out of the masses who frequent here ended up having a physiological reason for their SX but it wasn't als. I have been on here much less so if something has changed forgive me for missing it. That kind of info would only strengthen my argument that news of that sort would be a rarity at best. The fact is that 99.999999999999% of everyone on here's SX have a benign unknown cause.
2. Like it or not stress/ anxiety are way to common amongst us BFSers not to at least strongly consider the possibility that it might be the root problem. I know, I know, viruses and reactions to meds, etc… right? But seriously, lets set fear and frustration down for a second and look at it as if you didn't have syptoms or BFS and you were trying to figure out the cause for someone else you didn't know. Like a patient for example. This is what doctors do. They look for similarities, patterns, evidence or the lack of it. I personally had major anxiety struggles 10 years before I even thought about twitching and I am very convinced this was the major contributor of my BFS. Traumatic stress!
3. Has anyone found a more prominent possible similarity other than stress/ anxiety that could cause these SX that most of us seem to have in common. Again I know there are a few exceptions but Honestly.

So, what do you want to believe? What do you want out of life? What do you want to fight for? Why is it easier to dread the worst than to accept the advice of experts?

Again the answer is "FEAR". Fear takes no effort. When it grips you It wears you out, so it's natural to end up somehow remaining in it and relenting to it. Kind of like mentally getting your butt kicked. Hope and staying positive on the other hand do require discipline and sometimes tenacity.
Trust me, I understand both and know it's a struggle to stay positive but looking back I totally think it's worth it and a decision I wish I would have stuck to.
I went through hell for almost 3 years with this crap and I hate to see anyone go through that same hell if it's preventable.
God bless you guys. Enjoy the holidays with your family and friends. Live your lives. Your okay!
Today can be the day you got your life back!
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Re: Truth about als

Postby emmie.s on November 23rd, 2013, 5:45 pm

Amen!!!!
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Re: Truth about als

Postby MarioMangler on November 23rd, 2013, 8:05 pm

german wrote:The truth is that all you guys on here don't have als.



This should really be a disclaimer at the top of every post. In fact once you realize this fact and accept it, this board becomes awfully boring to read anymore. This is why you see so few veterans stick around aboutbfs.com and answer questions after a certain point in their experience. It gets awfully tiring to answer "is this ALS???" with "no" six thousand times in a row, when you can tell that nobody cares and nobody is listening. The simple fact is that no one here has ALS, and no one here is ever going to get ALS, and if your question is anything related to that subject any BFS veteran can save you a lot of stress and mental anguish in about two seconds. No, you don't have it. There. Done. It is time to get past that question and start focusing on something that is relevant, like symptom management.
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: Truth about als

Postby johnnythejet on November 25th, 2013, 5:27 pm

MarioMangler wrote:
german wrote:The truth is that all you guys on here don't have als.



This should really be a disclaimer at the top of every post.


Isn't that what your BFS FAQ is for? :P
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Re: Truth about als

Postby MarioMangler on November 25th, 2013, 6:55 pm

Yeah but no one has listened to me on this board in six years. What do I know.
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: Truth about als

Postby johnnythejet on November 25th, 2013, 8:21 pm

I guess you're past your prime and have nothin' left in the tank. Besides, all your advice is outdated....apparently.
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Re: Truth about als

Postby RGB on November 25th, 2013, 10:03 pm

german wrote:2. Like it or not stress/ anxiety are way to common amongst us BFSers not to at least strongly consider the possibility that it might be the root problem.



I agree with everything you said, but just to wring a bit more potential detail out of this....

Anxiety is extremely common here because anxious people worry about their twitches, start googling, go to their GP, want a neurology appointment etc. Some of the worst cases even joint message boards on the internet :)

I strongly suspect that a great deal more people twitch than ever walk through a doctor's door complaining of it. The ones that do are typically anxious and their anxiety very often exacerbates the problem.

But the conclusion is the same. We don't have ALS and for the vast majority of people their time is best spent ignoring it (rather than searching for cures etc.).

RGB

PS Text in bold is intended as caveats, I am talking about the majority of people, not everyone.
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Truth about als

Postby johnnythejet on November 25th, 2013, 11:56 pm

[quote="RGB"
But the conclusion is the same. We don't have ALS and for the vast majority of people their time is best spent ignoring it (rather than searching for cures etc.).[/quote]

Truth.
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