Where/how r our HEROES/SENIOUR members??

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

Postby twin2 on November 14th, 2010, 8:42 pm

I think I would qualify as a senior member since it's been almost 2 years. I have been meaning to reply to this thread, but I keep thinking "I'll do it later." That's because BFS doesn't weigh much on my mind anymore. Don't get me wrong, it crosses my mind at least daily, but it's usually a fleeting thought, not worry. I do still twitch, but only notice it when I am still. Toes and hands probably see the most action.

My life is busy and happy now. It was busy and happy 2 years ago too, but I didn't notice because I was beside myself with worry. I do think the initial worry is warranted though. It is really bizarre for your entire body to break out into twitches. Initial symptoms for me were sever and widespread. Who wouldn't panic over that? Everyone in my family completely dismissed me as crazy and this board saved my sanity. This was the only place where people would take time to "listen" care and take me seriously. No, I don't come around much anymore, but I still think it's a great place.

Thanks to everyone who helped me through one of the craziest, toughest periods of my adult life!

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

Postby mommylondon on November 14th, 2010, 9:25 pm

Thanks for stopping by Becky. Your post helped me alot in my early days here on the board, and you have always had no problem taking the time with me when I had a question about the symptoms, so thank you for being there.

Take Care

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

Postby bailyloves on November 15th, 2010, 6:05 am

Thanx Rodger,Raindog and Beckey for ur replies.Raindog ur leg video is very much satisfying to so many,i really appreciated it.Requesting MORE older fellows to drop there precious few words.I hope this thread shall b a great kind of support esp. to newbies.................Thanx in adv...........baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on November 16th, 2010, 6:00 am

Any more oldposter's please.........it seams max people have already posted and no more i can expect?isnt it ?I THANK all seniors who responded to this thread and provided agreat reassurance...thanx again.................takecare everyone....baily
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Re: Where/how r our HEROES/SENIOUR members??

Postby lindahcohen on November 30th, 2010, 8:42 pm

I've actually been meaning to log on....my twitching/cramping/weird sensation/generally feeling like crap began 5 years ago this month. I had every test under the sun, and this site was a lifesaver. My neuro said I would be fine. I actually printed out the About BFS for my Gp and she wasn't satisfied. Wanted me to have tons more tests and see more specialists. I really think she wanted an exotic case. I'm happy to say that I am FINE. I ended up cutting out gluten 1.5 years ago, and that has made such a difference. But I think BFS has different causes in different people. BTW, the gluten idea was my own - not my my GP's and not my GI doc's. You are your own best advocate! Trust your diagnosis. It's benign. Try to relax and see what makes you feel better. Most often that will just be getting your mind off your symptoms. They stink but they don't have to ruin your life. Take care everyone!
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Re: Where/how r our HEROES/SENIOUR members??

Postby Lefty Canuck on December 1st, 2010, 12:16 am

H All:

I'm 3.5 years into this now and it been quite a trip, very rough to get used to in the beginning as you panic and search out every bad angle you can think of and then gradually you settle down. I still twitch but I make sure that I don't have the extra twitching that anxiety or caffiene (my opinion) or fatigiue or booze or anything else can bring on. For the most part I feel pretty good, I did have a relapse for a month this past summer but found my good place again and just knowing that will help me the next time.
I think you can look forward to not connecting your symptoms to nmd, I don't, it would have shown its ugly head by now. My theory and it's as good as anyones, because I have read them all and nobody really knows here, is that I picked up a virus and it did its damage and now its gone. Hopefully in the long term things will keep getting slightly better as they seem to be and eventually I won't even think of it ever again.This is a disorder that you have to measure recovery in terms of years, not weeks or months.
I also think that a lot of bfs'rs stop coming here because the site gets really repetitive, people come and get help then become helpers themselves and stay a while then move on, i think its really healthy to move on, you can really get some weird ideas from this site, but most people are trying their best to help.
Three things you must do,1. you must rule out nmd, by going to your doctor and a nuerologist and getting and believing them what ever they say.2. You must get some treatment for the anxiety that has come into your life, its almost like a post traumatic stress that we cause ourselves.3. You have to leave this site and move on with life, accepting you will have twitching forever and its no big deal.
Wow, words of wisdom, from me, I really have tried it all, you name it I tried it and I think moving on is the best medicine, ativan is pretty good too but you can get addicted to that stuff. My hope for you is a to not give up, get yourself busy, sick people can't do the things i've done in the last 3 years, and I do hope you recover.

Later, Lefty
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Re: Where/how r our HEROES/SENIOUR members??

Postby mommylondon on December 1st, 2010, 1:39 am

That was a fantastic post Lefty, and thank you so much for taking the time to lay it all out the way you did. Sounds like some very wise words and some good solid advise. You sound very healthy to me, good for you. :D

Thanks again Lefty :D

Take Care

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

Postby lindahcohen on December 1st, 2010, 7:00 am

Lefty makes a good point - people move on because it helps with their recovery. There's nothing worse than reading new posts from someone who got the all clear from their docs and now has discovered their own new "evidence" that they are really doomed. The mind loves the power of suggestion! One of the most discussed topics of all time on this board is that the administrators have never seen ANYONE present with benign fasics and then go on to get one of the big nasty diseases. That's almost a decade of knowledge. Very comforting knowledge. And once you can believe in your benign diagnosis, and believe that it's true for the long term, it's sometimes better to get away from the posts that could possibly make you doubt. But it's nice to come back and visit and chime in once in a while! I've had almost every symptom out there (twitch, fatigue, cramp, sensory, etc.) and don't mind sharing that it will get better with time.
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Re: Where/how r our HEROES/SENIOUR members??

Postby TwitchyDoc on December 1st, 2010, 7:12 am

Linda, I agree but remember, nobody would return to say he got ALS or whatever. That is why the old timers are so needed here, just to pop up every year or so and let the board know they are doing well.
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Re: Where/how r our HEROES/SENIOUR members??

Postby johnnythejet on December 1st, 2010, 9:08 pm

I'm not an old timer, but I joined in 2005 when I started with the twitching. Twitching hasn't decreased that I can tell, but I hardly notice it anymore unless I "listen for it", or under times of great stress when it starts to affect my face muscles the most.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on December 2nd, 2010, 9:39 pm

GREAT post by Lefty,anyway thanx lefty,linda,jhoney u old timeres for taking the time to reply.I thought this my post is over but people r still responding,thats great n very reassuring 4 beginners.Total 10 olders have replied so far.Now i can request n expect more olders to come forward n continue this post.THANX one more time........takecare.....baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby whataprettyworld on December 9th, 2010, 10:30 am

I still pop in to have a lurk every now and then. I still twitch and buzz but once I accepted it was a mix of physical anxiety and somatisation things got a heap better for me. I struggled with crippling health anxiety for 3 years and the MS and then ALS fixations where but one manifestation of it. I would be loath to say I'm 100% 'cured' but I have 100% learnt to live with being a chronic hypochondriac and somatiser....I have actually written a book about health anxiety and have secured a UK publisher with the hope of seeing it in print about April or May 2011.

The only thing I can say is that recovery can only come once acceptance is reached and the longer we doubt and obssess then the longer we consign ourselves to what really amounts to a living death sentence....living a life the way some of us on here live our lives is no life at all.
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Re: Where/how r our HEROES/SENIOUR members??

Postby Desert Rat on December 9th, 2010, 8:40 pm

I am a senior at 77 years if age, but this is my first post. I have had BFS for about three and a half years. I know of no treatment, it comes and goes, but honestly I have no real pain, just the tingling in both legs, mostly below the knees. It doesn't keep me awake at night, I simply live with it.
As far as stress goes, those who know me personally know that I am an optimist, wake up smiling every day. I have no temper, I take life easy. Retired of course. One definition of optimist is: one, like me, who would get in a rowboat and go after MobyDick, with a gallon of Tartar sauce. Perhaps I am not typical. Hello to all, and thank you, John.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on December 9th, 2010, 11:08 pm

Thanx whataprettyworld 4 ur reply.It was an exellent post with encouraging suggestions.Sir,we wish bestluck 4 ur book to b released next yr.Wellcome Desertrat to this forum.Any more replies from old posters will b heartily wellcomed.............takecare.....baily
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Re: Where/how r our HEROES/SENIOUR members??

Postby dutch Ron on December 30th, 2010, 2:46 pm

The reason is that after 2-3 years you go on with your life and does not spent so much time on the board anymore. I now twitch widespread for almost 4 years now (I was 52 then) It started exactly on 1/4/07. I have learned to live with it. I am sorry to say that there is no day that I am not some time involved in a way with the twitching and sometimes still are a bit worried. Best thing is distraction, move a lot (Then you don't notice the twitching :) Worst thing is sitting still and doing nothing, then you get aware of all the twitching, so I started to avoid that. Beside the twitching, no further developments.
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Re: Where/how r our HEROES/SENIOUR members??

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