Seeking Reassurances From Seniors

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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
 
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 CareRobynn :D)
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.The Rat
 
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
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
Absolutely well said Bandersnatch_F.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
 
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...
 
Great post FantasticFurball.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.
 
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.
 

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