hi,I don't know why I'm going to right this but I just have to get this out of me. For those who don't know my story yet, I'm a 29 year old guy that suffers from twitches for 1 year and 2 weeks now.My calves twitches 24/7 , but I really mean all the time!!. I also have random twitches: arms, upper legs, knees, chest, back, neck, that have increased a lot over the last weeks. It the first 6 weeks of twitching I had for clean (except fascics) emg'sWhen the twitching began I went googeling, ofcourse, like many of us did. I read info, stories, etc...I read so much in the first months that I really can't get out of my mind anymore.So much stuff that is conflicting with each other.For example:* stories about people having clean emg's but later got dx with **** *** patients telling they had twitches YEARS before weakness started. Do very early stages exist?* Also other info that is not right here, like that *** patients don't feel their twitches, this is not true, I know patients and they really feel them so why is such misinformation on this board. The more I read the more the information is conflicting. So what is the truth? I really want to know it. I know if I post questions like this the answers will be: nothing is 100% sure, *** is rare, everything can happen and blablabla. This is not the information I need. I just want to know what is going on. Are those stories true. Are there more cases than only the 2 that have been discussed here over and over again. I read a post on this board about someone having read a report of someone twitching for 7 years before the weakness.My body is really acting so strange that it can't be just nothing. I twitch more than everybody on this whole board.I'm really convinced that I have *** in a very early stage, no matter what the doctors say, I read to much about misdiagnoses etc. Also the posts where people say: the neuro can spot *** as soon as you walk in. Come on this is sooo untrue. It can take for 2 years to have a dx, they even don't know what is causing this disease! They know nothing about it.I'm really conviced that I'm in a very early stage. I know this will kill me and weird as it sounds but I took peace with it. The only thing that's making me scared is the progress of this disease. The fact that other people would have to feed me, wash me, shave me,... those are the things I can't handle . Being in a wheelchair without the possibility to move... I just want to know when my weakness is going to start. How long it's going to take. I'm so fed up with the waiting.I hope by that time I can make my own decision to step out of it. I really do believe bfs exsist and that you all got bfs, I honestly mean that, you do but I'm a different story. It's like the feeling this is my punishment, my desitiny.Sorry for posting this I just had to get this out.Bart
Living with Constant Twitches
- Thread starter BartOne
- Start date
CautiousExplorer
Well-known member
Im having the exact same thoughts. I never had an EMG because of the neuro didnt found it necessary.. but after reading all those stories and my incredible perceived weakness, and my twitchers that seems to change into tiny little ripples that i can barely feel, im going to have an second opinion and ask for an EMG anyway. And i dont like the conclusion of my last trip to the neuro.. he literally said : "its most likely benign" MOST LIKELY? what about all these pains im having tho? Oh, im about scream because of it.. but its benign so im alright! 
I want to know whats going on instead of having to live with an unground conclusion.
I want to know whats going on instead of having to live with an unground conclusion.Bart,I experienced much the same things that you did. Perhaps I didn't twitch quite as much as you, but I was so convinced that I had ALS that my right arm and leg would cramp and feel weak ALL OF THE TIME. I still twitch, but I haven't worried about ALS for quite some time now. Do you know why? I started taking Luvox, an SSRI drug, almost four months ago for OCD. Now I know there are some on this forum that recommend against SSRI's, but I will swear by it. Luvox has really given me my life back... I can say with complete confidence that I am once again the same person I was before all of this ALS nonsense started.You do not have ALS. You have OCD. Go get yourself treated.Dave
I dont think there is a lot if desinformations... But I agree some information are just individual and not valid for everyone.The fact is, and even ALS patients would tell you, that most of them really doesnt have fasciculations before weakness. That is rare. Some time ago I started topic with this tema on ALStdi forum and every response was "I noticed weakness first" etc.BTW Bart, how many stories about "twitching years before weakness" have you read? Since what I know, those cases are so rare that are often reported and published. If somebody really twitched years before, they often tell it was focal (not widespread)...anyway, I would really doubt those stories, Im on a few ALS boards and know only 2-3 stories and all was in months...I understand your frustration, I feel the same. But nobody could give you answer, you know that..but I think if there are a lot of BFSers and none develops ALS - isnt that reassuring?
Good to know about the topic that you posted on that ***forumBart,I read your post and just feel terrible. I know the feelings that you are having when it feels like nothing is the same anymore and having the of people taking care of you and not being able to do anything for yourself. It's the thought of suffering that is scary, but listen...you need to live life! You only get one chance on this earth...is this the way you want to spend your time here? Start thinking positive and do ANYTHING possible to ignore your symptoms. I actually just bought a puppy. She's my therapy dog! She takes up so much of my time now...I don't even have time to dwell on my symptoms and fears. Just think of anything possible but ***. Get a new hobby, workout, go for walks, read or even better try focusing on other people. I've worried and wasted 5 full months of my life that I will never get back...I decided to start concentrating on people who have some real serious problems and it actually feels good not to worry about myself anymore. I don't know how many people are Christians on this site, but if anyone is and knows what is in store for them after their time here on earth...just remember, this life is only temporary compared to eternal life in heaven. This is our only chance to make a difference in other people's lives and to enjoy our temporary time on earth. I don't know about you, but when I die and it's my wake and funeral...I don't want to be remembered as the girl who was always so worried about her health and never enjoyed life. I want to be the one who was full of life and made a difference in others. I want their to be good memories. So start making those memories now!I pray that God blesses all of you on this site.LIly
Bart, I to think there are varying degree's of how BFS or whatever we have, effects peoples lives on this site, as with everything the severity of the symptoms varies from individual. It is obvious you are getting hit very hard, and Chris has proved in his videos he is also very severe symptoms. I defintely consider my symptoms very severe, my twitching is not as bad as it was last year, when my calf was like Chris's, but it is still way, way, above normal. The twitching is not as strong, and my main issue now is weakness, left arm/hand, right leg. This time last year I was twitching like a mad dog, but leg pressing 500lbs for 12 plus reps. Now, due to my arm, I have a hard time opening a jambed door to my garage, where my weights are. I do not even attempt to exercise, any exertion on my leg will send it into maddening, painfull twitches and spasms. The weakness is progressing very slow, but it only gets worst. But I will say this, I was cleared by the Mayo Clinic for the second time in March of this year, "absolutely no evidence of Motor Neuron Disease". This was 2 years 2 months after my symptoms hit. This was after the weakness had hit my leg, they acknowledged the weakness, they just could not explain it. The Neurologist said "Mayo Clinic, 2008, 2 years into your symptoms, we would not miss ALS". It is hard to believe what we have is benign, but apparently it is not ALS.I do agree there is alot of misinformation on this site, I think there a great intentions, but when you read something that you know to not be accurate when you yourself personally know someone with ALS, a little credibiltiy is lost. I know of three cases where the person who was diagnosed with ALS had written about there symptoms, and they do not jive with alot of what is written here. But this does, all three where easily diagnosed with ALS the first time they saw a Neurologist.When you read BFS in a Nutshell, it is a great piece, and makes alot of encouraging points, but it is not completely accurate.It states something like "if you had ALS and a car was about to run you down, you could not get out of the way" Depends, at what stage of the disease are you in. The following is the three people I read about.Lou Gehrig- in 1938 he hit 29 home runs, batted .295 and drove in 80 plus runs, it is beleived that ALS struck Gehrig no later than mid 1938. It is also believed if Gehrig would have seen a neurologist, which there where not many of in 1938, they would have suspected ALS, when he did see one in june of 1939, they new instantly he had ALS.Augie Neito-Ran 5 miles a day for months after the diagnosis of ALS. He had symptoms for 8 months before he finally went to the Mayo clinic get the weakness in is arm checked out. He was tested for three days, but they new what he had right away. Diagnosis, ALS. Augie proceeded to travel across the country for second, third, fourth, fifth, sixth, and seventh opinions.ALS,ALS,ALS,ALS,ALS,ALS.Jon Blaze- Completed the Iron Man in Hawaii, 5 months after being diagnosed with ALS. He went to the doctor for weakness and a soft spot on his hand. He was sent to a neurologist, diagnosed with ALS.I do not write this to scare you or anyone else, this is acutal encouragement. Here is the point, Neurologist, especially in 2008, do not miss ALS. There may be a rare case here and there, but it presents itself very clearly, and muscle twitching is just one small piece of the puzzle. Augie had 7 Neurologist all come to the same conlcusion, if I recall correctly, you have also seen 7 Neurologists. It is now over 2 years since Augie's diagnosis, he is complete immobile, he can move no muscles and can barely talk. They where apparently correct. Bart, your Neurologists are not wrong, you do no have ALS. You have something that is dramatically changing your body, but it is not going to kill you, so stop thinking about being in a wheel chair, and start thinking about adjusting to your new body. It is frustrating for me when people tell you "stop dwelling on this and start living". I am living, but my symptoms are making my quality of life the *beep*. I told my wife the other day, just because the Mayo says I do not have ALS, it changes nothing, (ok, not having ALS is a a big change) the symptoms are worst and getting worst. I am not sure where this all is going to lead, but it is not ALS, the Mayo is not wrong, nor are the 7 Neurologists you have seen.
Raindog, i understand what your trying to say, but it is VERY hard to "get a grip" when you twitch like i do. I am not having a go, i am just saying that when a part of your body moves and aches and hurts like my calf does, and your still 2 weeks away from seeing a specialist i defy anyone not to be scared.Chris
LaurentHCH
Well-known member
sorry, but this information here makes me sick!!!!!i have twitching for 5 weeks only, my neuro (clean emg) said, I am not having ***. What do want me to think now? That I will still get it and the EMG is just crap??????????If I had several neuo exams and EMGs I would be very lucky if they were clean!!!!!this kind of posts make me disbelieving everything that is written in the nutshell and I don't have the energy to stand with this, I will therefore probably leave this forum here....
LaurentHCH
Well-known member
yes chris, but i wasn't referring on you......i wish you all the best for you emg......try to phone them up to get it earlier because you cannot sleep bla bla bla.... if you want and if you can....i have done this and they took me right the next day....laurent
LaurentHCH
Well-known member
i just always wunder if my emg was too early (4-5 weeks after fascics started)
Laurent, everybody has his fears and doubts here. I twitch MUCH MUCH MUCH more than you, all day all night - 24/7 - 10 at the same second. You have been to an ALS CLINIC in Switzerland, that's the highest you can go! If they don't know it nobody does. Me too wonder a lot if my emg was to early - 6 weeks of twitching, but everybody says they would have seen it! I think you are 100% alright
LaurentHCH
Well-known member
so why bart we don't just believe it???you have been to a als-specialist in belgium did you? did he also say that they would have spotted it right from the beginning in the EMG?laurent
Bart,Your post is welcome as I'm sure many of us feel the same way you do, at the least from time to time.And yes, there is lack of understanding of this condition and surely this doesn't help.I'm still questioning myself if the issue is "cortical" (in my brain...), or "peripheral" (muscle/nerves). Surely they found nothing wrong with me. I did try hard to arrive to a conclusive answer, but at no avail. First in 2007, then in 2008. I'm fine.And yes, I don't feel fine, even if I shrug 50 kg dumbells 15 times without loosing the grip and without having ever used or smelt a perform enhancing drug. I just can say that I do not feel in the same way I was feeling 2 years ago.I get scared of the same things you do. I'm scared of the implications of me not being the man I'm right now anymore. I'm young, with a very young daughter and a baby to come soon.I've been reassured plenty of times...Ok, but then why I didn't feel this way before?It's a vicious circle.We need to focus on the carpe diem. This is our challenge. We've been told we're fine and we've got to try to enjoy that.I don't think we can do much more than that.You've been stubborn in asking for information. You deserve credit for it.
Well, I confess Im on a few ALS boards and make really good friends here..I mean Im not there just for prove myself Im OK. Those people are wonderful and strong...Some time ago I asked about going to EMG too soon. Everybody told me, and that is what you can find out if you think about pathology of ALS, that when fasciculations are already present, there WILL be changes in EMG. Twitching of muscle is due to denervation or reinervation. Those would be certainly seen as fibrilations, positive sharp waves and mainly high MUPs. Some PALS really have clean EMG and develop BULBAR ALS later. And that is logical - since bulbar ALS affects at first nerves from bulbar area, the limbs arent affected. Those are often the stories of having ALS after clean EMG. I know member of als forum exactly with this case, but she doesnt twitch!Another important thing - in US (I doubt its in another country) EMGs are often done by "technicians". I dont understand how it is possible - in europe only experienced doctor is allowed to perform EMG and immediately tells you results. Those EMGs also can be done wrong and believe me, its not my personal idea, I read it.Im scared too, of course I am, but its because I had my last EMG 1 year ago. I dont have courage to make another one. Guys, I would suggest you thing that really helps me: do excercise, build your muscles. If you can do that, it proves you dont have ALS (if you do that with muscles that twitch). With ALS muscle is slowly dying, sometimes really twitch before its weak, but cant get stronger. My example: 8 days ago I wasnt able to raise myself on my left leg. I just couldnt do that, it wasnt as strong as my right. I was freaked out and spent a lot of time on my rotoped etc. Now I can do that - probably the muscle was just out of the shape and short training helped.
Chris, have you read what I wrote? those who had clean EMG and later develop BULBAR ALS dont twitch! They have trouble speaking etc, bud not widespread twitching! Bulbar ALS affects at first nerves from bulbar area, thats why their limb EMG was clean.You take the sentence absolutely out of the context...
