Where/how r our HEROES/SENIOUR members??

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Re: Where/how r our HEROES/SENIOUR members??

Postby tiggida on May 6th, 2011, 4:57 pm

that' sso good to hear wjjw. Gives me more hope! I am 10 months into this. I ended up pregnant around 3 months into this and noticed a huge drop off in symptoms suddenly from 2000+ a day all over to several hundred a day to now the last few days I have had 50-100 or less a day, some days even less than that. I think the pregnancy for me might have helped, but it also helped me to take control of my anxiety and that has also helped. I am hoping after the baby is born it doesn't come back full blown and am hoping and praying that someday i can say I am twitch free(as much as a normal person). Thanks Bailey for having the oldtimers post. It really is reassuring!
Tanya
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on January 10th, 2016, 5:23 am

How is everybody?Happy new yr 16 to all .I am fine in good health.No ALS STILL.But twitching is on..How r my seniors like mariomangler,aussiesufferers,ghayes, twitchydoc n robynn n others.Waiting for their updates n replies.
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Re: Where/how r our HEROES/SENIOUR members??

Postby MarioMangler on January 10th, 2016, 3:58 pm

I'm still here. I just don't post very often because I've sort of moved on from thinking about this stuff. We have BFS, BFS is boring, after a certain point you just sort of have to get back to the real world. We can't just sit around and feel bad about ourselves forever, we've got stuff to do.

What I did is I wrote a book: http://www.amazon.com/When-Was-Worth-Pl ... 1452459448

: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: Where/how r our HEROES/SENIOUR members??

Postby MarioMangler on January 10th, 2016, 4:02 pm

Although if there is one thing I can say that will probably help people, it is that peoples' bfs symptoms ALWAYS get worse when the weather is cold. And they ALWAYS get worse during cold and flu season. This board is ALWAYS filled up with people freaking out between December and January because that's just how it works, and how it has always worked. Go back 10 years in the archives, you will see that December and January are always a weird time around here. So any time it feels like your symptoms "suddenly got worse" or "they suddenly flared up", just keep a journal and realize it happens every time to you at this point in the year. People tend to forget that because BFS people are always caught up in the present so badly. You need to keep the big picture in your head at all times and recognize the patterns you will go through. BFS really doesn't change that much.
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: Where/how r our HEROES/SENIOUR members??

Postby garym on January 11th, 2016, 3:18 pm

MarioMangler wrote:I'm still here. I just don't post very often because I've sort of moved on from thinking about this stuff. We have BFS, BFS is boring, after a certain point you just sort of have to get back to the real world. We can't just sit around and feel bad about ourselves forever, we've got stuff to do.

What I did is I wrote a book: http://www.amazon.com/When-Was-Worth-Pl ... 1452459448

:D



that's cool Mario!
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Re: Where/how r our HEROES/SENIOUR members??

Postby emmie.s on January 11th, 2016, 4:44 pm

Hi guys! Thats awesome you wrote a book Mario.
I am still around; though I admit I forgot about this forum for a few months (or rather was too busy to give BFS much thought as all). I am twitching as ever, and not giving it a second thought. My left calf was annoying me last night, but somehow I was tired enough to ignore it and get some sleep.
I have been twitching since before Obama's first presidency :) and I suspect I will be twitching and have hyper nerves and sometimes even cramps for many presidencies to come.
Take care guys!
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Re: Where/how r our HEROES/SENIOUR members??

Postby Dutchess on January 11th, 2016, 6:27 pm

I hadn't been on forever until the last few days and if anyone read I'm as twitchy as ever over the last 44 years .
Having a terrible hotspot flare in my left hand going on 2 weeks tomorrow but that's my normal . I don't post much but am around sometimes if I am just twitching so bad I can't stand it or supporting anyone that needs it .
BFS since 1972 age 10 : Twitching every single day somewhere ever since.
Appear to have inherited it from my father and have now learned that 3 of my 6 kids have it . It drives them nuts TOO!!
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on January 12th, 2016, 11:19 am

thanks mario..it alway feels good after reading ur post.What about other seniors?How r they doing..pl.update...Bailyloves.
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Re: Where/how r our HEROES/SENIOUR members??

Postby mariaj on January 12th, 2016, 7:09 pm

Happy new year all!

Its been years since Ive been back here. I started twitching, 2007 from memory and was in a terrible state at the time. Long story wont bore you with it but mum had ALS and all sorts of fears about my twitching consumed me. Once I hit rock bottom I started working on my anxiety and happy to report that after a period of two years my anxiety disappeared and the twitching just became a non issue. Most of the time I don't twitch but sometimes I get a flare up but I just ignore it, really not much at all. No big deal, Im healthy in body and mind and I think the key here is to work on your thoughts. My best piece of advice is to not analyse and think too much about twitching, leave them as an after thought. Be dismissive of them and they will just end up in the background of your mind. Just embrace your life and make me the most of it. Don't let dumb twitches control you. You are in charge of your thoughts so make your thoughts matter. Don't dwell on fearful thoughts and you will find the twitching will just be a non issue. I regained my happiness and I will never look back :D
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on January 12th, 2016, 10:37 pm

Thanx meriaj for update n also for giving an excellent peice of advice.Sorry to hear about ur mom.How is she now?Any other senior/veteran for giving updates??
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Re: Where/how r our HEROES/SENIOUR members??

Postby mariaj on January 12th, 2016, 11:41 pm

mum passed away back in 2009
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Re: Where/how r our HEROES/SENIOUR members??

Postby SecretAgentMan on January 14th, 2016, 6:58 pm

I am still symptom free of BFS after all these years. I still attribute to my experience with BFS to gut issues. Once I addressed my diet and treated for Leaky Gut Syndrome I responded very well and began recovering. It took many months to fully heal but I have been doing great. I still stop in from time to time to chime in and see how folks are doing. Life is good. :)
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: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on January 15th, 2016, 1:44 am

nice update secretagentman.How do u corelate gut with bfs.?What dietary changes u made n what is leaky gut?Pl.elaborate.I too have gut issues like milk n wheat intolerance.I stopped such foods but still have bfs.
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Re: Where/how r our HEROES/SENIOUR members??

Postby veryworried123 on January 29th, 2016, 1:28 am

Thanks for all these good posts

Would be great to have the old timers around just a bit more but as with most things time really does make things better

Thanks
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Re: Where/how r our HEROES/SENIOUR members??

Postby johnnythejet on February 3rd, 2016, 2:54 am

BFS is still something I barely notice but its still there for sure. Happy new year to yall
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Re: Where/how r our HEROES/SENIOUR members??

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