Living with Uncontrollable Twitches

oops what a reall mess, sorry, fellows :)I just maybe would not say nothing new, but in fact, most common medical consensus about 'how many time one should wait to be sure it is not ALS" is pretty well declared in forum sticky posts. it is average 4-6 month, standard follow up for 'just in case" is 6 month - 1 year. No weakness, clean EMG, good clinical exam - no ALS/MND, that's is. I personally do not think that any newest papers can shift that timeline or list of diagnostic criteria significantly, we may only maybe have new test methods added or maybe percentages refined slightly, becasue those terms and probabilities are developed on the basis of decades of clinical practie. I really do not expect that ALS would go same way as Turret syndrome (by the way it had its peak and seem now to be again relatively rare diagnosis as far as I know), or autistic disorders which had or have now certain diagnostic boom.And as for 'newest scientific information' which often seems to be to the contrary to common info, I would like to remind to all fellows, that often papers in medical journals are written for the purposes of further citation, or becasue grants were received and people need to report its usage, or for other purposes valuable only for the honorable paper authors but not for us poor hypochondircacs :) Therefore I mean that of course papers analysing most unusual cases of ALS or meta studies aimed to find correlation between breeding rabbits and risk of having ALS (or so) would be inevitable. And if each such paper would cost us another year of life becasue of further stress... dear fellows, I know it is hard but try to be as much critical as you can for your own safety.We here are community of twitchers. No one seemed to get ALS for over 14 years of existing of this board. Most (vastest majority) of us would be Ok, live long and die from common diseases in late age surounded, hopefully, by childern, grandchidlren and who knows maybe grandgrandchildren and their boy-or girlfriends from far far galaxies (maybe even tentacled ones). Who knows! This seems to be more probable outcome for me than any other.
 
Emmie- parneo is a very poorly disguised way of saying parneoplastic syndrome which is where your twitching would be A precursor to lung cancer. The upper limit of this would be 4-5 years.Most importantly... This presentation of cancer is so rare that you have a better chance of winning the lottery twice. For some it is Scary stuff. Not exactly news in this forum though...
 
Suggestion and reminder all: Just remember that when you post something for everyone to read, please ask yourself "Will this be a point of confusion to newer, overly anxious twitchers and possibly be misunderstood as a very scary subject?" Many subjects are inherently scary so we can prevent all overreaction but just be careful when stating a fragment or piece of an otherwise benign subject or study. This isn't a rule as much as it is something I've learned painfully from my own mishaps over the years. Beyond that, lets try to avoid personal drama, etc..To TD: 6 years ago, did you ever think you'd make it to the 6.5 year mark? I think you've come a long way and remember that people have reported their BFS cases on this site in excess of 30 years. Many BFSers have reported returns and overall increases in symptoms even several years after onset.....our twitching doesn't always slowly subside and/or disappear in time.
 
Thanks for the clarification ionyZarrion, I figured as much! To the anxious twitchers: Rare cancer, car accidents, sudden heart attacks, choking on a hotdog, getting murdered, rabies, meningitis, bird flu, the plague, and ALS are all scary as *beep*, but we should all just focus on living, because who wants to be the poor fool that wasted months, or years of your life worried if you have ALS, when I can nearly assure all of you that you will die of something much more common. HOORAY!!!! :D)
 
I am not on these boards much at all anymore, but I want to chime in and say, so what if TD is freaking out over his symptoms? Time means nothing. Part of BFS is being annoyed by twitches. I am 1.5 years in and the twitches still annoy the ever living sh*t out of me. Let the dude vent. I hate the shoulder and arm twitching too...my entire body minus my face has become like my calves and it will probably always be that way! It will always annoy me, I'm sure about it. But yeah, TD, you are fine...maybe you can get some symptom relief with Lamictal?
 

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