Where/how r our HEROES/SENIOUR members??

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

Postby bailyloves on December 30th, 2010, 9:55 pm

Thanks Dutch Ron for ur reply.Yes, best treatment for twitching is to just ignore them n give 0 importance bcoz more u concentrate over them,more they come.Thanks 4 suggestion dutch ron which will help more people in perticular newer's.I wish u happy nu yr 11.I request old posters to come forward n update us about urself regarding ur health by continuing same thread.Ur informn will b of great reassurance to others.THANKS in adv....takecare....baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby terry in sf on January 18th, 2011, 4:56 pm

It's true that "life goes on" and those of us who have been here a while don't come by as often anymore, but I remember when I was in the throes of the worst of the fear that it was so reassuring to hear from "old timers" so I try to stop in now and then and it's still comforting to me to see familiar names and faces. But someday hopefully soon you too will be an "old timer" who doesn't come by as often! :D Sometimes people stop by and post on one or two threads and you may not see all of the old timers' posts, too. My own symptoms started four years ago so I'm not one of the original people but it does feel like it's been a while (thankfully!) and I'm not as frightened - no way to have sustained that level of fear for any greater length of time anyhow. Periodically I notice twitching and think about it but it is easier to let go of the worry. We are okay. All we can do is live the best life we can and enjoy and celebrate every day we are given. Try to keep your mind focused on that and not on the worry.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on January 18th, 2011, 8:33 pm

Thanx Terry for your reply and reassurance.I feel full satisfactory reassurance can only b provided by the old sufferers .I mean ,I dont want to hurt any body who is not a senior member.i request more old posters to come forward,update us,help newbies fighting against als/ms FEAR.Thanx again,takecare everybody.....baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby Jenni32 on February 10th, 2011, 1:54 pm

I joined in 2005 but had twitched about 2-3 years before that. I had severe twitching in my feet and popcorn calves. I also had periods where I could not lift my hands without them shaking and being weak. The twitching was everywhere. I also had problems speaking because of twitching tongue. My neuro said it was because the twitcing was making my tongue fatigued. I don't know, but it did get better for a period of 2-3 years. I would definitely still have twitching but they were not so severe. I found if I was stressed they were worse. Well I recently started twitching full force again. I am hopeful it is just a flareup and will get bearable again. It is extremely worrisome and annoying. This time my twitching is again everywhere but really bad in my hips. I do have discomfort, but I had that at the beginning also. It is a tired irritated feeling. Just my story.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on February 10th, 2011, 9:28 pm

Thanks jenni for updating urself.Sorry to hear that u r in relapse phase of this condition n I wish u best of luck for ur recovery.More olders r requested to post in this thread which will b a sort of great reassurance to everyone.Please take care everybody...baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby fbandersnatch on March 21st, 2011, 12:35 am

I first showed up here almost 6 years ago (has it really been that long?). Like everyone else, I don't have ALS. I'm only back here because my right index finger has been going nuts for the past two weeks, and I'd like to figure out how to stop it from twitching because it's getting annoying. Unlike before, I have 6 years of experience that says that this isn't the first sign of a terrible disease.

Most of the "old-timers" move on because they realize the same thing: if nothing's happened in 1 (or 2, or 3) years, it's not going to happen. Nasty diseases like ALS and MS just don't take that long to show up—and I know about MS because I have two siblings with it. ALS is rare. Very rare. And even rarer in people under the age of 50. Spend your time worrying about dying a car crash, not from ALS.
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on March 21st, 2011, 5:24 am

Absolutely well said fbandersnatch.Thanks for looking in d forum and felt happy that ur just fine even after 5/6yrs of twitching.Posts like this perticularly frm seniors like u r always greatly reassuring to many. SORRY to hear about ur finger twitching n i am sure,it will disappear soon someday.And yes,risk of dying frm accident is always greater than the risk of dying frm ***-i totally agree with u on this
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Re: Where/how r our HEROES/SENIOUR members??

Postby fox2run on April 1st, 2011, 6:32 pm

I am close to 4 years with this... My feet, ankles, calfs are twitching like ever. All the time, non-stop. But... Today I ran 4,2 kilometers for the 4th time this week. Im in better shape than Ive been for a long time, and even though my legs and feet feel weird at times they still function tip-top... Man I run fast... And Im 37....

Twitching aint an issue, really...
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on April 1st, 2011, 8:58 pm

Great post fox2run.4 yrs with fascics without any clinical weakness strongly suggests benignness of d problem and sure it wont b the issue to u.I am praying 4 my 4 yr landmark(presently in 2nd yr with this stuff).It is therefore truely said that BFS IS A WAITING PERIOD GAME.More veterans/seniors r requested to update themselves so as to help others.Takecare everyone! Baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby fox2run on April 6th, 2011, 10:22 am

bailyloves wrote:Great post fox2run.4 yrs with fascics without any clinical weakness strongly suggests benignness of d problem and sure it wont b the issue to u.I am praying 4 my 4 yr landmark(presently in 2nd yr with this stuff).It is therefore truely said that BFS IS A WAITING PERIOD GAME.More veterans/seniors r requested to update themselves so as to help others.Takecare everyone! Baily.


No its not a waiting game. Its a believe your neuro game. If you do that, you wont have to wait. Problem solved.
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Re: Where/how r our HEROES/SENIOUR members??

Postby MarioMangler on April 6th, 2011, 4:52 pm

Exactly, it's not a waiting game at all. A waiting game is what you are intentionally doing to yourself to sabotage your BFS recovery. Knock it off, it doesn't help 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: Where/how r our HEROES/SENIOUR members??

Postby sharon slack on April 17th, 2011, 1:36 am

Hi

Just popped in the other day and posted on a couple of topics. But without a few oldies around
I guess its hard for newbies to be reassurred, so I will try and post more often.
In my case its just a matter of getting on with life, living with the symptoms but not letting
them overtake my mind the way Iused to. I guess that makes you drift away from the board
which everyone will do eventually! :D

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

Postby wjjw on May 5th, 2011, 3:40 pm

Still alive and gave up twitching!

Cheers,
Bill

p.s. don't look at my calves anymore ... so maybe ... but I'm not checking!
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Where/how r our HEROES/SENIOUR members??

Postby bailyloves on May 5th, 2011, 9:15 pm

Cogrates Bill!Thanks 4 updating.R u really twitch free?pl describe ur present symptms,if any and how u combat with bfs during initial period?thanks in adv.Baily.
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Re: Where/how r our HEROES/SENIOUR members??

Postby wjjw on May 6th, 2011, 4:34 pm

bailyloves wrote:Cogrates Bill!Thanks 4 updating.R u really twitch free?pl describe ur present symptms,if any and how u combat with bfs during initial period?thanks in adv.Baily.

hey BL, yes I am really really twitch free. That is to say I twitch no more than a "normal" person (everyone twitches). So my present symptoms are none at all. I don't remember how long the "initial period" was--I'd have to look at my old posts but it was quite a long time. Had to be at least 4 years of twitching in EVERY MUSCLE of my body, so my advice is to be patient. There was actually nothing for me to combat, except trying to convince other twitchers that this odd condition is nothing to worry about. :-)

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Where/how r our HEROES/SENIOUR members??

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