Body Twitching For 11 Months

[InkedMama]

Hi there I had a few minutes on this wonderful dreary Friday to wrie while my daughter is trying to take a nap. THe other day I came on here for a bump of reassurance but after leaving my post I felt rather silly I have been experiencing this widespread random body popcorn crappy twitching near 11 months now. I had it almost 2 years ago but it never gained this much attention.After my post I felt horrible. Because I spent MOST of my time on here trying to help people as I was helping myself through this. Some times the best medicine is to help others and in the mean time you can help yourself. First of all, let me state that through this 11 month ordeal I am still as strong as I was..I grew a beautiful baby in my body, I expelled a beautiful baby out of my body and I recovered through a harsh c section after 28 hours of trying to have her naturally. (vaginally) to me that is strong. I recovered. If something was wrong w/ me such as the sinister I HARDLY doubt my body would have EVER bounced back. Usually things manifest after such big ordeals "IF" they lie beneath the surface. I look back and I spent HALF my pregnancy well 1/3 of it WORRYING that I had *** and that I Wouldn't get to see my daughter grow. I spent numerous hours in doctors offices doing tests to prove I didn't. I am soo glad I didnt harm my daughter during all these STUPID CRAZY STRENGTH tests I was doing EVERY DAY ALL DAY. Now I think about it..I cant believe I did a EMG while pregnant but I was told it was completely safe and my neuro told me it was more safe than having me stress and cry every day.Let me tell you newbies what this BFS cost me. It cost me my marriage. My husband could not stand my depression and my self testing and my planning of my funeral and constantly telling him I was dying. I mean seriously. How much can ONE take?Here we were bringing a beautiful baby into this world and all I was obsessing over was death and twitching. I hardly gave my pregnancy much thought because I was soooo scared of the future I was afraid of getting close to her.After my EMG things were better.. I had numerous areas tested by the cheif of neurophysiology and I was told 110% this was not als but BFS!(she is actually researching it).Let me wrap this up and get to the point. I lost some of the most precious time in my life to this CRAZY thinking pattern and I lost a husband who just couldnt take the hyperchondria insanity any more. I am doing much better now. Yes, I have twitches..Yes my hands may ache and cramp but have I ever had to stop and get help because I couldn't function or do something ?? NO?I used to pay attention to my every move. Count the twitches . Watch people and how they carried their self then compared it to myself. I still do that. Infact today in the sprint store this lady dropped her cell phone 3 times. She wasnt freaking out. I just chuckled because 9 months ago.. I would have DIED if I'd done that..I wouldnt have blamed it on the lotion on my hands or what have you.MarioMasher seems like a great person and is here to help. Sure he might have days where he needs reassurance but just from reading his out pour of numerous posts and his bumps of old ones gets you through it and brings you back down to earth. PLEASE read his posts and take heed in his responses. He's right when he says not ONE person on this site has come back from neuro saying "POSSIBLE ALS" There were TWO PEOPLE who LIED and were CAUGHT LYING that you can dig up so dont let that fool you. I ran into those as well.My point of this story is just to say. PLEASE ..GRAB BFS and except the dx as what it is benign and quit searching for something that isn't there or EVENTUALLY YOU WILL FIND SOMETHING.I hope all of you have a good weekend. Its just a twitch...

 

[MarioMasher]

Ha ha, thanks for the plug. Yes everyone, I am here to help and I'll do anything I can to get everyone to see that you don't have a deadly disease. I mean, all it takes is about 24 hours of digging through the archives to see that NO ONE has ever come back from their doctor with a worst case scenario. Seriously, NOBODY. It has never happened. Yet for some reason ALS info and "ALS exceptions" and "twitching leads to ALS" stories still get passed around every day like they are gospel. Seriously, look at the data. Look at the back history. Read all of Alonzo's wonderful posts. He has been studying this condition for more than 10 years! He probably knows more about BFS than most neurologists. And he will tell you over and over again. YOU DO NOT HAVE ALS. ALS doesn't present itself anything like BFS. They are completely different.Every time you hear an anecdote like "I heard about someone who had ALS and..." or "I heard that one time ALS showed up as..." just remind yourself that you aren't reading a firsthand medical journal. You are hearing a ninth or tenth-generation re-telling of something that might have happened to someone somewhere. You are playing a very elaborate game of telephone. And since when does the message in telephone come out the exact same way that it went in at the start? It doesn't! You have no idea what that person's story might have been. You have no idea what their symptoms might have been. You have no idea if they ever really even had ALS, or if they even existed! So stop treating stories like that as gospel. If you want gospel, go back in the archives and read any one of the hundreds of posts that Alonzo wrote before he (rightfully) got tired of answering the exact same questions over and over again and moved on with his life. Because seriously, all the answers are there. All the facts are there. All the data is there. There isn't one question on this board that hasn't been asked (and answered) at least 10 or 15 times before.Do you want to know how sure I am that nobody here has ever had ALS? I have spent the past 24 hours digging through the "members" database, and asking people who no longer post on this board if they still have any BFS conditions. I have been tracking down people who posted here back in 2002, and I am asking them for an update. And do you know what the most popular answer is I have received from them? It is generally something along these lines:"Oh gawd. That was a long time ago. I can't believe I used to obsess over that."There is your answer! In five years, you won't even believe you used to hang out on this board. You will be like all of the other "veterans" who eventually moved on. Because that's why people disappear from this board. It isn't because they die. It isn't because they got ALS and can't move. It is because they found something else to do with their day. As one lady wrote back to me, "Yeah I still twitch. But after I had my baby, I guess I had other things to worry about." Seriously, one person I wrote to said that it's been so long since she posted here, that she doesn't even remember her username. THESE ARE YOUR BFS PEERS!In summary, I know this was long, but I just wanted to reassure people that yes we all twitch, and yes we are all going to have to learn to deal with it. Yes, some of us will have more twitches than others, and yes some of us will have more pain and discomfort than others. But if a doctor tells you it isn't a serious disease (as they always do), then LISTEN TO THEM! Beat the anxiety. Get it right out of your head. Because what Lovely said about her marriage sadly seems to be a familiar story around here. BFS sufferers tend to lose their spouses a LOT. Go back and read through the archives. That is a familiar story. It happens all the time. And do you want to know why it happens all the time? Because spouses get sick and tired of always hearing about this! Seriously, I don't mean to be harsh, but do you want to be the next marriage or relationship that breaks up because of all your complaining? Do you want to be the next casualty of BFS? Do you want your children to think of you as a basket case who never leaves the couch? Of course you don't. Remember, once you let BFS take over YOUR life, it takes over everyone else's around you as well. Just because you twitch, it doesn't mean your spouse or family has to suffer too. Because this isn't their problem. It is yours.Ok, that's it for me. Thanks Lovely for the plug and I'm glad you feel better today. I'll try to post some of the "update" posts from the 2002 and 2003 people if I can get their permission. I think everyone will find them to be informative.Oh yeah, and please if you ever get the chance, take a moment to drop Alonzo a PM and thank him for all of the research he has done for this board. Because you might think my posts are helpful, but I'm not saying anything new. I'm only repeating things that Alonzo has already said hundreds of times. He is the true hero of the BFS community.And also, if anyone has a MySpace page or a Facebook page, and wants to add me, I would be more than happy. I actually prefer to write to people outside this board if I can, because I think it is psychologically more healthy. Hanging around here all day, you just start to think of yourself as "a sick person." Plus I think it is more helpful to speak to fellow BFS people without the shield of anonymity. If anyone is interested, my MySpace page is Thanks,MarioP.S. Oh yes and because someone asked, yes I have a stupid username, and here's why. When I was a kid (1987 or so), my friend and I used to make these fake "wrestling" tapes, where we pretended we were famous wrestlers and we filmed all the matches. One of my best characters was a villain named Mario Mangler. Hence my username on here. It's the same username I use on just about every message board (BFS or otherwise). Yes, I know it is lame.

 

[Savanturn]

Yeah, I agree Mario is really helpful and its nice to have somebody who really cares about especially newbies. I would say if there are only 3 medical reported cases of people who had twitching for 1, 1,5 and 4-5 years and later developed ALS, its simple exception to the rule. Those were so exceptional cases that were studied and the study later published...I will tell you true story of PAL I know, how simple the story can be misunderstand: He had told me he had twitching a year before diagnosis. He said no weakness..but he experienced many falls. He simple didnt know that those falls was due to his weak leg muscles - I think thats the point of many scary stories..