How you can beat BFS - by a 10+ year veteran

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on July 20th, 2013, 9:09 pm

Bumping this old thread of mine because I think it would be helpful to a lot of newbies. There are a lot of good responses to my post as well, just read through the entire thread and you will learn a lot.
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: How you can beat BFS - by a 3+ year veteran

Postby johnnythejet on July 20th, 2013, 9:50 pm

I'm glad you bumped this. Lately the forums have been mostly full of everything BUT good direction and advice from veterans. This was one of your great posts and it will help direct new twitchers for years to come.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on July 20th, 2013, 10:17 pm

And they never did sticky it either. It was a [email protected] shame.
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: How you can beat BFS - by a 3+ year veteran

Postby SuziQ on July 22nd, 2013, 7:17 am

MarioMangler wrote:And they never did sticky it either. It was a [email protected] shame.


I nominate it for a sticky! How do we make this happen? Gary????

Blessings,
Sue
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Re: How you can beat BFS - by a 3+ year veteran

Postby TyWebb on July 28th, 2013, 8:29 pm

johnnythejet wrote:I'm glad you bumped this. Lately the forums have been mostly full of everything BUT good direction and advice from veterans. This was one of your great posts and it will help direct new twitchers for years to come.


I think it is great that many veterans come back and post. It obvious which ones have it figured out. You all do us newbies a great service with your experience and advice. Without y'all on the board, it would be a panic attack waiting to happen.

So I say thanks to all of y'all.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on January 19th, 2014, 3:10 am

I just wanted to bump this thread and sticky it, since I wrote it a few years ago and it sums up pretty much everything I have to say about BFS. This is the type of thread that will help a lot of newbies who are trying to figure out exactly what BFS is.

Also, I should really change the title of the original post. I am not just a 3+ year veteran, now I am nearly a 6+ year veteran.
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: How you can beat BFS - by a 3+ year veteran

Postby jerseygirl on January 19th, 2014, 10:43 pm

Mario, I have been posting and reading posts on this for two years now and somehow never read this. I am battling a relapse right now and this was like a slap in the face. What really is getting to me is reading how all these wonderful vets suffered at one point but are in such a good place now which is once again giving me hope. It seems most people snap out of it fairly quickly which means I need to really reevaluate to see if this is how I want to continue to live my life which clearly the answer is NO. I keep thinking that it is out of my control but reading this thread, it seems like my attitude is pathetic and I need to take the control back. Thanking you for making this post come alive. I am a believer that things are meant to be and I really needed to read every word of this thread.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on January 19th, 2014, 10:48 pm

Thank you! Glad I could help. :D

The one thing you (and really every newbie) needs to keep in mind is that all of us old timers, we went though the exact same thing you are going through right now. We have all been there. No one knows the way your brain and body are working right now better than we do. So just remember that when you read a post like this. This will be a thread that -you- write about four years from now. You will write the exact same thing. You just have to always keep in mind that battling BFS is a 2 steps forward, 1 step back progression. You are going to have relapses. We have all had relapses, there is no shame in that. But over time things will always get better. Always remind yourself of that.
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: How you can beat BFS - by a 3+ year veteran

Postby veryworried123 on January 20th, 2014, 12:02 am

I wish this was a sticky
I wish I read this before
I find myself on here only so I can read oldtimers senior members posts

I've dealt with a lot of health issues some real and some I totally destroyed my nerves on
Even just today I tore my mcl and while knee was raised I was starring at my legs and they were twitching about 200 times a minute and snapped and started hitting legs yelling "for *beep* sakes give me a break already"
That lasted a few minutes and then I calmed down and kept thinking on all your good advice

I travel to Moreno Valley a few times a year and would love to buy you a gluten rich meal if your free one day

Someone please sticky this
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on January 20th, 2014, 12:28 am

It is a sticky now, I just stickied it. I had no idea we had that kind of godlike power until about an hour ago.
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: How you can beat BFS - by a 3+ year veteran

Postby RachelLee on February 25th, 2014, 11:34 pm

I can't tell you how thankful I am to have found this site, and that BFS exists. Because, I have gone through ALL of these things. I'm actually laughing at how crazy it is I can relate to it. I'm such a hypochondriac and always have been, so when I was 16 and started to feel twitches, I remember freaking out and diagnosing myself with ALS and MS. I was scared for so many months, and told my mom about my twitches. My mom graduated from nursing school, and she of course has always had good medical insights. She didn't think I had anything to worry about, but I still would always imagine myself to have something much worse. Fast forward 4 years and I still have the same twitching thing going on from time to time. I have some days when it is bad, and some days when it isn't even noticeable. When I dwell on it and think about it and fixate on it, it always gets worse, and then I think so much about it I start to image phantom headaches, then diagnose myself with another disease and so on and so forth. Back in December I was super hypochondriac about it and it ruined a lot of that month for me. Every so often I get in a depressed state about my twitching. I need to just go to a doctor and get it verified as BFS, because I have a textbook case of it. And I show no other symptoms to anything serious, and I have been fine for the past 4, coming up on 5 years. Again, I'm still just so grateful that after all this time of worrying, that I actually feel better and not so crazy and such an oddball anymore. *WHEW* It's a huge sigh of relief.
"For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind."
2 Timothy 1:7
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on March 1st, 2014, 7:14 pm

Welcome. You are one of us.

Did I mention that I beat brain cancer nine different times last year? We BFSers are g*d *beep* medical miracles. :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: How you can beat BFS - by a 3+ year veteran

Postby justwantittostop on May 10th, 2014, 6:24 pm

So glad to have read this post. I have been a lurker for 5+ years, always too nervous to post. This post had me in tears. I am a 35 y/o female (also a computer programmer) and also have a serious history of health anxiety (hypochondria...). It started when I was 19 and my sister was diagnosed with ovarian cancer. This was 16 years ago and she is still alive and kicking with two beautiful girls of her own! After our scare with her, I was convinced I was next, and that whatever I got, since she was cured, whatever I'd get would be the end-all, be-all. Totally irrational, I know..but that is how my hypochondria took root. I diagnosed myself with skin cancer and had moles removed that doctors tested and told me were perfectly normal. I thought I had bone cancer when I had an ache in my arm that didn't go away. Anytime I heard of someone who had some form of cancer, I'd do the "checking" to make sure I didn't have it. I had a kidney stone once and was sure that was the end. I had a swollen node in my neck that was biopsied and is negative and has never grown in size, but I still constantly check it to make sure it's the same. I could go on... I've had two children and both pregnancies were not easy and were 9 months (x2) of serious anxiety. The twitching started in my baby toe sometime between my first and second child. I remember asking my OB if maybe it was pregnancy related (at the time I couldn't really have told you if it started before or after I got pregnant) and she said, "probably...pregnancy does weird things". When it didn't go away after giving birth I figured it was still the pregnancy hormones. When it was still there a year later, I googled it. You know the rest of the story....went down the complete and utter panic path and was absolutely convinced I was on death's door. Went to the doc who seemed totally unconcerned but ordered the EMG and referred me to a neuro because she could tell how upset I was. I've since been to 2 neuros 3 times, and each time they have assured me I'm fine. Just twitchy. At this time, it was still just my little toe, sometimes my big toe, and my lips/chin. I'd get the little finger bumps here and there too. I was given a prescription for Klonopin and saw a counselor for a while. All last year I was "better". Still twitching but generally ignoring it and not letting it get to me. Then in January, I had a friend who's husband was diagnosed with terminal brain cancer and I had a major downward spiral. The anxiety it caused me, worrying for her and her family re-ignited my twitches, and this time they came back with a vengeance. I twitch now in places I never did before - calfs, neck, elbows, knees, eyelids, etc. This of course just fed the flames and once again I was convinced that I had some horrible disease (at this time confident it was not ALS or anything along those lines), but what could it be?? Surely, I would tell myself, I'm just some freak with some unknown medical disease that is progressing...and what's next? The fear and worry is like a chicken/egg (which came first?)...the twitching gets worse because of the anxiety and the anxiety causes more twitching. I was on the verge of a panic attack (and have already made another appt with my neuro, who of course can't get me in until July, which is also stress inducing b/c I want answers NOW!) when I finally came back here. I think it was more than coincidence that I found this post. It is EXACTLY my experience. I actually had a handle on the twitching, but just last Tuesday woke up from a horrible nightmare that caused a major surge of adrenaline - the kind that warms your whole body and sends your heart pouding, and sure enough here I am a few days later with re-ignited twitching and re-ignited worry. I realize that I'm letting this control me and I need to break free of it. I have a long road ahead, but this post gives me so much more hope!! Is there a place that has more veteran stories like this? IT's so helpful, especially when you feel alone and that no one can relate to your experience. My family all think I'm nuts and that this is just another one of my self-diagnosed problems. I'm ranting now...but thank you SO much.
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on May 13th, 2014, 12:56 pm

There are lots of veteran stories like this on the board, you just have to look around for them. In fact I would say my story is pretty representative of just about -every- veteran story. The only problem is that the happy veteran common sense stories tend to get drowned out by the louder newbie scared panic posts, so you tend to think the two of them are equals. They really aren't. But I am glad my post could help you out today and I hope you are feeling better.

Remember, 95% of BFS is determined by how you react to it. Always keep that in mind. It is always under your control how you respond to 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: How you can beat BFS - by a 6+ year veteran

Postby MarioMangler on September 11th, 2014, 2:13 am

I try to bump this thread and remind people of it every couple of months, so here you go. If you are new to dealing with BFS there is a lot of wisdom 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: How you can beat BFS - by a 6+ year veteran

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