Questions About S Scare EMG Reliability

I have some questions for all of you because I'm still in the **S scare.When is an EMG reliable???I began to twitch 20th Oct 2007: 1st EMG 22th OCt 07, 2nd EMG 29th Oct 07, 3rd EMG8th Nov 2007, 4th EMG 6thd Dec 07. So I had the EMG's done between the 2nd day of twitching and 1.5 month...Should EMG definitely have seen something (all four normal)????Today , I got the twitches, buzzing, internal vibrations, muscle pain ...for 5 months and one week. When do you think you are safe? In case of **S, when does the weakness starts? 5 months and no real weakness, is ok??? Still worrying ! (last clinical 7th Feb 08)bart

Hello Bart!I had my first neuro visit last Friday with an absolutely fantastic well renowned, highly experienced neurologist from Melbourne! He told me how after nearly 7 months of twitching I would have some very serious problems which I dont, I am fine. He said "Sandra, I could tell when you walked in you were ok!"Twitching in MND comes with very noticeable clinical weakness. You have had 3 or 4 emgs, they were fine, you are fine! It really does take alot to get around the anxiety that this BFS causes.Hope this helps you.Warm regardsSandra

Bart,ALL of you EMGs would have detected **S, including the first, IF that was what you had--which you don't. Twitching with **S means the muscle is dying; therefore, by the time you are twitching, the disease is clearly present and an EMG will pick it up, even in asymptomatic (that is, "non-twitching") limbs. Time periods vary, but most people on this board have been told that if there was any doubt at the start of their twitching about **S, they would "know for sure in a couple of months." At 5 months with no weakness or wasting (and with 4 clean EMGs), you are in the clear. Even without the EMGs, you are in the clear but the fact that ALL of them were clean should put your mind to rest.You are physically OK; BFS wil come and go like this--**S/NMD does not. It comes and stays and gets worse. Work on the anxiety and fear; that will help you ease your BFS symptoms and, more importantly, let you get back to living your life as you should.Mark

Sandra, Mark thanks for you answersWhy I'm panicing again. My left arm and wrist kind of hurts for 2 weeks, feeling I have a little difficulties grabbing things...put I can still lift things, although with heavy dumbells it feel that I can lift more with my right arm (maybe because I'm right handed ??) , so its very confusing. Then suddenly I looked at my left forearm and it looked so skinny. Now I measurerd my left and right forearm and they are equal (at each place) . I'm 1.85 m and 73 kg - Then I looked at pictures from last year at the beach, but couldn't tell clear differents ...but anyhow I'm really focused on that now. You still think I have nothing to worry about after 5 months twitching and 4 normal EMG's (in the 1.5month). Still freaking out on moments like that.ThanksBart

BART- People are not lying to you hon. You are not even being "Reasonable" at this point. You've had more EMG's and seen MORE NEURO'S than MOST people on this site. I am a nurse- NO ONES BODY IS SYMETRIC! PERIOD. END OF STORY. So even if you measured and your measurements were a little "off" no biggy b/c as I said...were not all symetrical. Go look at your ears and eyes in the mirror. I gaurantee you..they are not EVEN! Atrophy , let me repeat "true atrophy" you would NOT have to stare at , second guess and ask people.."is that smaller than that side". Its apparent. I've seen pictures. Hurting/Pain is a sensory problem. Sensory problems are not involved in ***. My shoulder hurt last week and I had two freak out days. Thing was. I could still do EVERYTHING I Could w/ that arm. When I stopped thinking about it and testing it...the pain went away- still gone. Your in a vicious cycle. Your letting it control you- Its sad. You should know better than this. If you had ALS after all those tests and been given the clear. Your going down in history!!!!! It doesn't happen. PLEASE stop focusing on your body. Your mentally ill @ this point and your brain is going to keep playing mind games I promise. Please believe others. I know I sound HARSH, but Im telling you- Its not worth losing the past 5 months of your life w/ unecessary worry such as this. Your going to want it back one day. I promise. Lovely

Hi DeedeeThanks for your answer(again). It's really difficult to accept that nothing is really wrong. I always find new things to focus on. Pain in arm, wrist, skinny arm, internal vibrations,... I'm really tired of it all. I hope I can get over this quickly, although in this stage my mind is trying to make me believe me that I've got 'it'. Why can't my stupid brain accept what the doctors said!!?? Thanks for the support.Bart

Hi Bart,I totally know where you are coming from with the fear. Right now I am right there with you, but you should listen to what everyone is telling you. From what I understand, I believe one EMG is sufficient to tell if something is going on. I went to a neuro 4 days ago and was told I was fine, that he could tell just by looking at me that I do not have ***, and just like you, I can't let it go. I never had an EMG so I am going to get one because I feel like this is the only way I can let this go. Once I do though, if it comes out clear which I hope and pray, I am going to get some serious therapy because this has taken such a toll on me mentally. Just as my screen name says, I am missing out on life completely. I am tired of hurting my friends and family like this and feeling like half a person. I know the only one to blame for this is myself because I keep telling myself I have this disease despite evidence to the contrary. You need to probably seek out some therapy as well so you can start moving forward. If the EMG is clear, I know I need to do the same.Nettie

I missed out on life also for at least 6 months and drove family and friends nuts. The only thing that worked was CGT (psychotherapy). After every reassurance I always wanted the next reassurance. That is why some people have 3-4 EMG's. It never is enough. CGT did not cure my twitching, but I am leading a normal life again.

Hi Nettie & RonThank you both for your replies:Nettie: I know exactly what you mean! Everyone says your OK but you can't believe it. They say 99,9%, and I keep on thinking that I'm the 0,1%, that it's my faith, that I have to die in a horrible way! I always think that the signs were not clear enough with me or that I'm just a special case that will get **S. Also the symptoms never stop, then you feel the twitching, then the buzzing, then pain in your wrist, you think you got weakness and so on...never a day that you can think 'O God thank you I'm fine'. You read all these messages here,and everybody is fine and then I'm thinking I will be the first one that has to write here that he's got it, you know...Ron: As like you I have been missing out of my life for the past 5 months, I decline every invitation, don't dare to enjoy something (thinking if I would I definitly got **S), my family and friends are really going to a rough time too. I see a psychologist for a month now but I don't know it's really helping me, it's ofcourse me that has to change my way of thinking...but still am very scared...I hope it's all going to be over soon!Best RegardsBart

Bart, I think the exact same way, that I am going to be the one rare case that gets it at such a young age so I know just how you feel. The twitching does go on and on as well as a variety of other symptoms like perceived weakness, so it's hard to believe we are actually okay even when we are. I was brushing my teeth like three weeks ago and my arm started feeling tired. I practically freaked out. I started crying, thinking this must be the end. Then I focused on something else and now my arm feels completely fine. I go through the same thing where I think if I am too positive that I will definitely have the disease, so it's best to be negative. I have had more events ruined in the past nearly eight weeks, a birthday party and two holidays. I don't enjoy eating anymore since I keep thinking something is wrong with my tongue. A part of me knows I am being completely irrational but the other part tells me I definitely have it. Ron is right too. We look for repeated reassurance. I never was the type not to trust my doctors either. If my doctor told me that I didn't have strep throat, for instance, I believed it. I didn't go home and obsess that they missed it and this was going to get worse and worse. I was reassured by my GP several times and even by a colleage of hers that I 100% don't have ***. My neuro told me the same thing too, but what did I do? I did the same as you. I doubted. Now I have an appointment with my GP for Wednesday to discuss things and an EMG next Monday. I realize though that this has to be it. On Wednesday, I plan to discuss my fears and my therapy referral because I can see myself still having little doubts in the back of my mind even if the EMG is clean. I see you are already having therapy. Perhaps if it's not helping, you might seek out a new therapist but don't go for anymore EMGs or tests. One EMG was enough and you truly are fine. That first EMG proved it. Are you on any meds for your anxiety? At this point, I know I am going to need a good medicine for my anxiety/OCD. I was given Klonapin which helped my panic attacks at first but now it doesn't seem as effective and I refuse to up the dose to more than two pills a day.Nettie

Hi Nettie,I now exactly what you mean. I'm completely freaking out today. My left arm is kind of hurting for two weeks now ands since a couple of days I have some problems grabbing things. Now I'm sure I've got it. Could it be possible that the EMG's missed it? I had all my test done in the first 6 weeks of twitching. I'm really losing it, why me?? I really think I'm that special case...I take Efexor and temesta. I made a new appointment for an EMG the 8the April, should I go? I'm so afraid to go. I'm sure the EMG now is going to poin out that I've got it. All of my body is being weird: twitchings, weakness in left hand, tremor, internal vibrations, shaking... I'm so tired of it...Bart

Dear Bart: I understand soooo totally where you are in the fear cycle. I had gotten so bad with anxiety and fear that I really didn't want to live. Finally, I had to do something because I realized whether I had ALS or didn't, ALS was consuming my life. I have noticed twitching (and I say noticed because I am sure I've had it all my life) in November of 2007. I had just been prescribed Prozac for anxiety and the normal twitches that everyone has, just exploded. The fear escalated. Since I have never personally known anyone with ALS and the symptom descriptions are so broad, I just couldn't come to grips with the diagnosis that two of docs gave me. The last said emphatically that I DONT have ALS. I have had no EMG no Nerve conductivity study, not even a CPK blood test. What I did have was a thorough clinical exam - twice. All completely normal----docs did NOT think I needed to see a neuro. It has taken me a good 3 months to come to terms with the fact that they didn't take me further. I didn't realize why, until I went to one of the ALS forums (please don't do this in your state of mind---I have really freaked myself out by doing this before) and reading some of their stories. (First time I could do this without crying and feeling scared).This time though I could see the difference in where I am and where they have been. In ALL cases (at least the ones I read) the problem was very, very clear - no doubt about it. One lady had gotten to the point of needing a cane and couldn't go down stairs BEFORE she ever felt a twitch. I don't mean she kinda felt weak, or she had a little trouble doing it, she was saying legs run and they wouldn't----she couldn't do jumping jacks, or hop on one leg. (note: Even weakness in itself doesn't necessarily indicate ALS, but PROGRESSIVE CLINCIAL weakness - and from what I've read, that progression moves right along.) Also, their problems weren't a twitch here and there, a tired feeling this weak in an arm, next week (or month) in a leg. It was permanent once it started. So....what I am saying is that one day my right leg may feel heavy or weak----then be okay in a few days. My arms may feel tired when I am drying my hair. But when I say to my leg go, it does. When I say to my arm, raise, it does. I can run, hop, jump, I can stand on my tiptoes, I can walk on my heels, I can get up from a seated position easily. (Heck, I still do high leg kicks and I'm 50!!!) I do not have slurred speech (even though sometimes a word or two doesn't come out right), or trouble swallowing (yes, I may ocassionaly choke if I drink too fast) or anything else. All these things I have done at one time or other all my life--and so does everybody else. Do I feel something not right from time to time----yes! Do I twitch----you bet. Do I feel weak---you bet! But it doesn't stay. It is here today, somewhere else in a few. In a nutshell-----if a person has ALS, they KNOW something is wrong and so will the people around them----just by watching. The docs are right when they say they can tell when you come in the room that SOMETHING is wrong. Reread Kit's post on dents and atrophy----this lady knows what she's talking aobut. So, I have just about come to the conclusion that a perfect clinical exam should be all you need for reassurance, otherwise you do get caught in a loop. I am actually beginning to find myself in a place where reading about ALS or other possibilities just isn't as interesting as before. I hope that means I am moving on. I hope you will find yourself there very soon. Don't let fear of ALS suck the life out of you---you have too much to be excited about---mostly, you are fine. Think of this possibility---what if I don't have Als......then consider what that can mean for you and go do it!!!! You are going to be okay!!!For what its worthCindy

Bart, my friend, you are waaaaay over the edge. You are focusing on the exceptions to the rule, if indeed these stories are accurate. What you WON'T read someday is a story from one of us where it says how we went from doctor to doctor, test to test, being told we're OK only to turn out in the end that---WE'RE OK! That stuff doesn't make news or get anyone's attention. There have always been people who didn't have the symptoms of this or that and turn out to have this or that. The reason you read about them is that they're so d****d rare. ALS is a rare disease among the general population to begin with; these cases you cite--again, if they are accurate--are even rarer. How about you focus on the millions of people who get an accurate diagnosis of whatever they have each year? You have no real evidence whatsoever that you have ALS; but you have a ton of evidence that you DON'T! Stop going to those sites. This is all self-inflicted. Focus on the facts of your situation; do not project yourself into some other one-in-a-million tale. You would NOT have to troll the internet looking for these examples if such misdiagnoses and surprises were common or even likely.Until and unless you have clinical, documented, confirmed evidence to the contrary, you do NOT have ALS. I'm a doctor but not a medical doctor, but I'm willing to say that what you do have is severe anxiety bordering on the self-destructive.Stay off those other sites; listen to your doctors (and your tests); stop self-diagnosis--the anxiety will only make your symptoms worse; and above all, please seek out a mental health professional. All those EMGs cannot be wrong.Stay off the other sites! Mark

Hi Marc,Indeed I have to stay of those sites, but sometimes I can't help myself. It's like I'm the worst case here ! Why am I so scared? I don't recognize myself anymore. I hope I can get past this really soon, and everyone thank you for your answers it's really helpful.Best regardsBart

Bart, Please, please, please don't bring stories in from **s sites! Most of us DO NOT want to go there, and come here for support! If you are not able to stay off such awful sites, please do not bring them here!

Hello Bart One from Belgium,You are really something. What do you want from us?! Comfort? Relief? No one can help you because you are too obsessive thinking about something again and again. Get the dog and take a long walk every day. Or just enjoy in Belgium chocolate. Stay away from Internet for some time. YOU DO NOT HAVE ANYTHING EXCEPT EXISTENT NEUROSIS!

I have to agree...Bart. Obsessing about something you are cleared of not 1, not 2, not 3 but 4 times is it? or 5? IS NOT healthy! MANY MANY Of us here HAVE NOT been to see neuro's because our Gp's dont see a referal as fit. So what can your worrying do to some people that havent had the EXTENSIVE reassurance that you have???? That's right...set in fears again- The worse thing you can do is go to the *** websites. For NUMBER ONE as sick as it is..you can't decipher what is real and what is not real on those sites. PEOPLE TROLL and go on places like that to STIR UP FRENZY. My psych and gp's told me this.NUMBER TWO: Words get lost in translation. People say things but it can haev 10 different meanings...YOU cant decipher these things over there and bring to light "just what is right".NUMBER THREE: Not that I like to pull age in this, but HOW OLD ARE YOU AGAIN?The Rarest disease even more RARE in your age.NUMBER FOUR: Why dont ya talk to your therapist about this. Has him/she not told you to stay off the internet and quit dx'ing yourself? Your doubting doctors, your doubting neuro's and your doubting TEST!!!! Definative test....Please get some help, I understand your anxiety- but its out of control right now. I worry for you. You need some medication.Its not fair for you to feel this way. Its awful.Lovely

First of all Cindy, what a fantastic post!! I CAN really relate to everything you said!Bart, listen to Cindy and Mark they have been around here a long time! As I said my wonderful neuro told me as soon as I walked in his room he could tell there was nothing wrong with me. Like Cindy I have not had an emg or any blood work just an amazing thorough clinical and reflex test. He told me I dont need an emg. I have the weak arm feelings, sometimes when shampooing my hair my arms tire etc.Bart honey you have to try and get a grip on the anxiety, i know I have been there!Take careSandra

Hi guysI'm very sorry but I don't want to upset anyone or keep annoying you. I just am very scared that the test were done to soon (first 6 weeks), because my left hand keeps being very weird. ). I think I'm just looking for answers and reassurance. Sorry to bother you. Bart