Twitching for a Year - Fear Increasing

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BartOne

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I've been twitching for 1 year now, mentally I was feeling better however that 'better' feeling is gone again. Instead the *** fear has gone up again. I'm twitching like crazy and don't find this to be normal anymore. My legs are really getting my insane also upper body twitches are more frequently. :( I completely lost it again after reading someone posted here that he read twitching stories of *** patients. I heard there was only one case of a 70 year old that was twitching for a year and got being dx with ***. So, what's the truth about that now? I'm wondering, could *** patiens have been twitching for year(s) due to *** and not go to the doc with it because they are not scared by that or didn't looked it up at the internet? Or have they been to the neuro and got the dx BFS but eventually it was *** ??? I don't know what I can believe anymore. :confused: I had 4 clean (except fascics) EMG's in the first six weeks of twitching and my last clinical was 16th Sept 08, nobody every made the suggestion that it could be due to *** only me. But I always seem to think that I forget to tell to the neuro things, crucial information , that I haven't emphasized how bad I'm twitching. So what to do? The only thing I can think about again is dying. I don't talk to my friends or family about it anymore because I know they are really fed up with it. They all believe nothing is wrong, but I know what I'm feeling...Sorry to bother you all with this again :crying: Bart
 
Bart ...you are anxious this creates adrenalin which then feeds the twitches. You need to channel your thoughts elsewhere mate, meditation or get an hobby you can get wrapped up in and start living life to the full. TELL yourself why you have not got ALS as to why you think you have.Regarding twitching prior to developing ALS ....I suppose it perfectly possible to suffer from BFS or whatever you want to call it for a year or more ...then as you are a % of the population you have a % chance just like anyone else of getting ALS at anytime in your life. I think here in the UK its about 1:50000 so in theory you are just as likely as the next person regardless of your condition now of being the 50000/1 shot.ATB
 
I'm not very fond of statistics and chances. I also think the number given is too low. In Belgium (and that's a small country) I know (not personally) 4 people with *** under 30. If you are that one to get it you are that one and statistics don't matter. That's in my head...I could be that one
 
You really need to calm down mate, there are ALOT of people on here who would love to be where you are right now, ie 1 year and still no weakness. Be thankfull of that........odds are soooooooo on your side right now no matter what you think. If what you had was nasty then im totally sure it would not take one year to say hello to you...it hasnt.....relax mate! for the sake of your sanityChris
 
Bart mate,If any neurologist came across someone twitching for over one year to have developed ALS, I am sure this would have become a case study (just like the 70 year old). And there is no proof they were related. Any patient would mention the twitches (even if they were before the weakness) in a consultation. The neuro would have a great work to be published and terrify the mind of all of us twitchers.If you are over the 6 months mark, I guess you are pretty safe. I try to think dailly that I am getting to 2 months, and as far as I know, if there we to be other symptoms, they would already have come. I try to focus that vibration and buzzing is not ALS, that tingling and numbing is not ALS. That wekaness has to come first, and then you should worry. Don´t think about statistics. We don´t know background, if these people have genetical ALS, or have overworked themselves (like your doctor himself said), or even another external factor like pesticides, etc.Be confident, after one year, so many professionals and doctors you have visited, there is NO WAY to be ALS. Be confident, there is NO chance. I would love to fast forward one year and get to where you are. I would love to have the statistics going away from me. For me, I am going to my neuro again, and if he gives me another clean bill, I will start some type of therapy. Yes, I am weak and want drugs to make me happy.Have a Duvel and relax, and enjoy... nice champions leage match tonight :)
 
About the paper...Was the guy that has posted the paper myself?I think you know what you mean and if you read the paper the EMG of that elderly gentleman was not normal. It was assumed that the abnormalities were linked to a back problem (normal at that age...). And then again, as many said, if you think about millions of people, surely there will be someone with BFS and something else. So, it doesn't matter. Your fears present very fast and go ahead very fast too. As a matter of fact you've been told by many experts that your clinical scenario is the one typical of BFS. Fears come from the unnknown and I tell you Bart, I don't like either seeing my body twitches (I had mega twitches to arms and forearms today) without knowing exactly why. It causes anxiety (or vice-versa???).However, it's 19 months and, as you know, I'm traning daily. My performances have not changed and I'm stronger (speaking about of muscles) of most of my peers. Ah! Twiches are common in "sport people" as you know...Well, they've started when I had almost dropped my traning due to external circumstances. Maybe something to do with the "external circumstances"?Keep relaxed.
 
No edado, it wasn't you ;) I think it was a newbie that said he read a lot of contradictions about twitches on *** forums. Information that would contradict bfs nutshell. Don't know why but this got me trough the roof again :crying: :crying:
 
No that was me and that came across ALL wrong mate, all i can tell you is this, i spent ALOT of time on the ALS forum for the first few weeks as probably most did here, but NOT ONCE did i read a story of someone twitching for a year and then getting the disease NOT ONE.Your totally totally fine! Heck if i get to a year like you without any weakness i intend to get drunk big style :D) Honestly mate i think you need to think of the year without weakness thing and focus on that !!Chris
 
Well I read a lot of stories that say that UFOs fly down at night and leave crop circles. Does that make it true? I think that the general internet "knowledge" of ALS and ALS symptoms basically boils down to a giant game of telephone among laypeople. I heard something about ALS somewhere, so I whisper it into your ear, and then you whisper into someone else's ear. And then he whispers it to someone else. And pretty soon we have tenth-generation "knowledge" being passed around by people who have no connection to the actual source (and, most wonderfully, are dying to share what they know.) After hanging around this site for three months, I can confidently say one thing. No one I have met here has ever had ALS. I don't think most of us have ever even seen ALS. For most of us, we might as well be talking about the Loch Ness Monster.Have a nice day. :D)
 
Feeling a bit better now ;) Just the increase of twitching I guessThanks for all the replies. Sometimes we need to hear it from others to get to our senses againThanks B
 
Indeed CautiousExplorer it's one of the most horrible diseases in the world and there should be more money for research.They should give more attention to *** and the patients. My best friend's father died of it (but I didn't know the symptomns before I started twitching)
 
BartOne: You do not have to be scared, you are not such exceptional...the chance is almost zero.The best example and proof:There was a case of patient who developed ALS after one year of twitching and cramping. And it was so rare, that the study was published about it! (Cramps, muscle pain, and fasciculations Not always benign? Mamede de Carvalho, MD and Michael Swash, MD)So that clearly shows how rare those cases was..
 
This observation raises the possibility that lower motor neuron hyperexcitability may precede motor neuron death in motor neuron disease. - this was also reported in the study and that's what concerns me :confused:
 
Bart,"This observation raises the possibility that lower motor neuron hyperexcitability may precede motor neuron death in motor neuron disease."MAY, it does not conclude that it can precede. If it would say "precedes" it would be fearsome.This is a one case, studied by scientists from Portugal, England, something isolated in the world. If it was that common there would be no study, or a study showing more evidence. If someone read this study, I am sure, it would have very strange characteristics, we don´t know the background. And I also imagine that in 7 billion people, at least, one will have BFS turning to **S. Most of the readings, if you twitch for 6 months and still is ok, they you can be very very very relaxed about. (4 more months to go, argh!) :/
 
Chris, don´t take it literally. That is not the rule!That´s the s*** you read around. A lot of neuros, I am sure, and I also read that here, would say two months would be enough for a series of other strange symptoms to appear. And you would know that you were sick by then.But that´s just bla bla bla. As Bart said, statistics is beautiful when you are not contained in them. Anything can happen.Let´s just believe that everything, for us, points not to happen. So let´s keep on high spirits. Everyday that passes is reassurance you are ok. Let´s put it that way.
 
You don't have to wait six monthsmy first neuro said no *** only after 3 days of twitching: clean EMGmy second was in my 2nd week: no ***my 3rd neur said: no ***: in the 3rd weekmy 4th neuro said: BFS no *** in the 4th weekmy 5th neuro said: BFS no *** in the 6th week--- none of them said to do a follow up, neuro 4 & 5 are professors MD, the 5th even has a research team.Oh god I sound like a freak when I read this...
 

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