A powerful lesson?

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A powerful lesson?

Postby SecretAgentMan on December 27th, 2016, 2:54 pm

It is sad and unfortunate that this site is no longer accepting new members due to a lack of admin support. I was checking into the site after being gone for quite some time though and noticed something very interesting. Without the constant influx of new and scared people it is really striking how the site is getting more and more stale. The posting is getting more and more calm. In other words, the entire forum membership is turning into all veterans of BFS. It is very powerful to recognize that the panicking stops at a certain point as everyone on here has either found a way to cope or has completely moved on with their lives to the point that they don't come here anymore. How cool is that? So, if you are new to BFS and are logging in just to read what is here on this forum to offer in the form of lessons learned from others, please take away this. BFS won't kill you and you too will find a way to move on. That may not seem like much consolation in the height of hysteria, but when you compare it against what your fears are leading you to believe it will in time. Thank you.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: A powerful lesson?

Postby MarioMangler on December 28th, 2016, 1:55 pm

This is a great post. I have always said that you know you are over BFS when you start getting bored by it. This whole forum is a bunch of people who are bored by BFS now. It is beautiful.
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: A powerful lesson?

Postby garym on December 29th, 2016, 11:45 pm

"sticky" worthy post.....good point!

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Re: A powerful lesson?

Postby traveler234 on January 11th, 2017, 5:17 pm

Mario, you helped me through a really dark time in my life. Not sure I ever thanked you!
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Re: A powerful lesson?

Postby stayingstrong on March 16th, 2017, 3:55 pm

Hello everyone,

It's been about 7 years since I've posted on this forum. I started having twitches in my pinky finger a few weeks ago, and legitimately started googling "onset symptoms of ALS." It brought me right back here to this place. I started twitching in 2007. Here we are, ten years later, and I'm still kicking! The initial symptoms and diagnosis period of BFS is something that can really take a great physical and mental toll on you. I don't think I've ever been in a darker place in my life, then when I was fully convinced I had ALS and would be dying within 5 years. People may laugh about it now, but during that time, it was the most terrifying thing I've been through to date. My twitches come and go. To be honest, they're just a part of my life now. I notice they get worse with certain activities...like drinking coffee or caffeine, alcohol consumption, certain teas, certain physical activities, etc. The difference now is, I expect them, and I don't let it ruin my life like I did years ago.

I am really sad to see that this community has sort of slowed down and new people aren't getting approved. The people on these boards helped me realize that I was going to be okay. There is no substitute for that. Even when my new annoying daily pinky twitches started, I came back here, just to reinforce to myself that this is completely normal. There are ups and downs, and good days and good years, and bad days and bad years with this Syndrome. I just wanted to post for all of the people reading and tell you that you're going to be okay. There are so many people on these boards that have had this disorder for way longer than me, and they are just fine. It's scary, it doesn't make much sense, and no one knows why the hell it happens, but you're not going to die. Frankly, once you settle down and accept that, all it is is an annoying part of your everyday life.

I just wanted to say thank you to the people still reading this. You have helped me keep my sanity and not lock myself inside thinking that I am on death's doorstep. You are all wonderful people, and I hope that you're happy and healthy and well.

xoxo,

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Re: A powerful lesson?

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