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 raindog on August 25th, 2011, 7:06 pm

Hope the Mods make this a sticky Mario, lot of sense in there mate. :D
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Re: How you can beat BFS - by a 3+ year veteran

Postby johnnythejet on August 25th, 2011, 7:07 pm

Yep, great stuff Mario. This would have been very helpful to me 6+ years ago!

"Stick-y!....Stick-y!....Stick-y!....Stick-y!"
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 25th, 2011, 7:19 pm

Thanks! When I get that time machine working, I will go back to 2005 and we can get to work on you.
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 mommylondon on August 25th, 2011, 7:27 pm

I have to agree with the others....this is absolutely sticky material Sir Mario.....fantastic words of wisdom in your post. Newbies would save themselves months of stress and worry if they took every word to heart and followed your prescription to the letter.


Thank you and take care

Robynn :D
Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: How you can beat BFS - by a 3+ year veteran

Postby ImOK on August 25th, 2011, 7:29 pm

Mario,
How long did it take you to write this and when is it coming out in paperback?
I can't read it all - forced to sit in front of computers at work, I can only go for a 10 minutes at a time when not receiving payment. But it seems that you have come to a good finale so I salute you and your perseverance (and your wife too); both for seeing it through so doggedly and intelligently and also for taking the time to write it all out for the newbies here. Either you have a good heart, this was self-therapy, or both? It doesn't matter - it was great for you to go to the trouble of posting it all. :P :D
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 25th, 2011, 7:30 pm

Thanks Robynn. Glad to hear you are doing better these days too. At the beginning I think you were wrapped up in anxiety as tightly as anyone I have ever seen. You have come a long way, you should be proud of yourself. :)
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 August 25th, 2011, 7:38 pm

MarioMangler wrote:Thanks! When I get that time machine working, I will go back to 2005 and we can get to work on you.

Okay, let me know. Anyway I can reduce days of my life wasted due to fear of the boogieman....I'll take it!
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Re: How you can beat BFS - by a 3+ year veteran

Postby mommylondon on August 25th, 2011, 7:40 pm

Thanks Mario, I am quite proud of myself...but it was hard to snap out of it. In the beginning..I was one of your worst because I was about the only one being told they had ankle clonus (along with all the other strange symptoms we get here) but ankle clonus is supposed to be a sure sign of Upper Motor Neuron Damage...Still got the clonus, but nothing other then BFS symptoms have come about...so I just decided I was going to pretend and live like I dont have the ankle clonus and get on with things. It was the best decision I could have ever made and I will continue to live until I cant. BFS, you, and this board have tought me life is to be lived, not wasted. Like Darr said on his goodbye thread....I choose LIFE.

Thanks for all your wisdom and support Mario.

Take care u

Robynn :D
Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: How you can beat BFS - by a 3+ year veteran

Postby Barbie800 on August 25th, 2011, 7:48 pm

When I first starting twitching your story was one of the first I read. I have to admit I actually printed it out and reread it over and over. It helped me tons. You have helped me and so many others on this board. I'm glad you continue to post.
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Re: How you can beat BFS - by a 3+ year veteran

Postby Shanny63 on August 25th, 2011, 8:10 pm

Hi again, interesting that you bring up itching, I have been itching like a crazy woman since all this bfs rubbish started..does anyone else itch? Interesting...thanks again... :)
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Re: How you can beat BFS - by a 3+ year veteran

Postby RandyR on August 25th, 2011, 9:45 pm

I actually had the side of the nose crawly about ten years before BFS. I remember telling my wife about it at a chick fi-let one day, it had been going for several weeks at the time, she just looked at me weird and said "OK"... :lol:

Then for three years straight I had a feeling(and still do) across my back from shoulder to shoulder that feels like a wet shirt sticking to my skin. My wife would say it's just dry skin and laugh at me in a cute sort of way....

Then Fasiculations/google got a hold on me and would not let go, I will admit to not being a very intelligent man, so I had no fear of any of it being a neauro disease, I thought it was from my back injury, which I was panicking about having to have surgery. I thought the buzzing and twitches was from a disc out of place laying on a nerve.

Well me being the terriable speller that I am, my couisin introduced me to google for spell check. So I think to my self why not type in body wide twitches and see what is causing these(again I'm thinking disc and am really scared that is what it was going to say) Then Bam, google said go buy a grave plot fat man, your going down.... :o

Sorry for the ramble, Awesome write up Mario!! And I also say, please make this a STICKY!!!!!!!!!!!!!!!!!!!!

By the way, do you get any eye symptom's? That has been my latest freak out.....
PAX ARMIS ACQUIRITUR


But they who wait upon the lord shall
renew their strength; they shall mount up with
wings as Eagles; they shall run, and not be
weary; and they shall walk, and not faint.(ISAIAH 40:31)
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Re: How you can beat BFS - by a 3+ year veteran

Postby RunningBear on August 25th, 2011, 9:57 pm

Mario,

Excellent work, excellent post. You were the first person to respond to my first pathetic post at aboutBFS early last year, me being too scared to even post here until after I had an EMG, because I somehow in my silly mind I had convinced myself I had ALS. You are known in my house as "the clown', if you remember your old photo . . . These days I don't even give a *beep* about my twitches. You know how it goes. Thanks again!
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Re: How you can beat BFS - by a 3+ year veteran

Postby mommylondon on August 25th, 2011, 10:03 pm

Shanny...here is a survey that I put together some time back about "the other BFS symptoms" and I asked people how many of them had sneezing and itching....I have had both in the worst way since I got this stuff....several responded that they had noticed this stuff too...I was later harassed a bit for putting these two symptoms in my survey, but as you can see...others had noticed these things as well. As good as I'm feeling these days....I still sneeze like I have allergies when I dont, and I itch often like I have poison ivy but never have...fun, fun. Heres the link to one of my surveys viewtopic.php?f=8&t=15757&hilit=+the+other+symptoms

Take care

Robynn :D
Quote: To mend the hearts of everyone that feels alone.
http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: How you can beat BFS - by a 3+ year veteran

Postby chrissi on August 26th, 2011, 3:13 am

Mario, this is an awesome post. And I can see so much truth in it, so many things I have felt before. Actually, that was what I felt when the BFS-Symptoms started, like tons of adrenalin rushing through my veins. I have felt like BFS before, about 12 years ago.Me and my hubby had a really bad motorbike accident in the woods, I felt how the bike slipped in a corner with over 100km/h and saw the trees in front of me and at this moment i knew I was going to die.....somehow missed the last tree in this wood and was slammed into a potatoe field. It took me several minutes to figure out I was not dead and OK, although the bike was an absolute mess and could't be repaired. After getting up from the ground, I felt all the BFS-stuff for the next days. The friend that picked us up had to carry me on his arms because I had the jelly legs, the tremors, and I could't stand loud noises for weeks. I remember that I even twitched a lot!!
I really agree with these theories you wrote, I had some living hell the last couple of years. After many misscarriages and a really bad pregnancy my son had near-sids and was put on an apnea-monitor for 2 years. He had it really bad,the monitor alarmed up to 10 times a night when he stopped breathing and I had to stimulate him . My body was in alarm every single minute of my days and nights. Then my second son was born and checked in hospital and guess what...he had the same crap. So I had almost 4 years not sleeping really deep because of fearing that your child will stop breathing forever. Not to mention the many times in hospital when they didn't let us go home because the oxygen-saturations were so bad. And then there was so much other *..* I think this all and a bad viral infection brought me to this point. I'm trying to calm down , I'm working on this. I'm taking anxiety-medication and I'm starting psycho therapie an monday. But I have to say, this website was one of the most helpful things for the last weeks. And this post, I'm going to print out and stick in my wallet (where I already have "why you don't have ALS"). Just in case I have a panic attack anywhere where I can't get to the computer......
You veterans, you are such a big help. I don't know where I would be right now if I hadn't found this website...
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: How you can beat BFS - by a 3+ year veteran

Postby MarioMangler on August 26th, 2011, 10:45 am

ImOK wrote:Mario,
How long did it take you to write this and when is it coming out in paperback?


Would you believe it only took me about 45 minutes to write that? Anyone who has ever read my TV columns or my pop culture essays would be able to tell you, I am very wordy. I have a very obvious case of writer's diarrhea.



ImOK wrote: Either you have a good heart, this was self-therapy, or both? It doesn't matter - it was great for you to go to the trouble of posting it all. :P :D



Yeah it was definitely a little of both. I have found that one of the best ways to truly believe what you are saying is to write it out and explain it to somebody else. I have been having a rough go around lately with my BFS recurrence (not panic, just joint pain) and I remembered how much it helped when I used to write about my storyline the last time. So as much as this might help other people, I also hoped it would help me. To me, the key to BFS always seems to be "You need to find some way to get your mojo back." I am currently in the process of trying to get my mojo back.
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

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