This post will step on many toes I guess and I will get flamed by many people.But I am here for 16 months and I see same and same patterns all over. One has it's sixth or n-th clean EMG in a year, 2 years etc... and everybody is congratulating him/her for being "clear". I don't think that is "clear" at all.First EMG may cleared him for ALS, but in all respect, all the rest are expected to be clean. But the majority who didn't have the neuros ordering the EMG's, it means to me, he/she can not deal with underlying anxiety.Sixt clean EMG is nothing to congratulate in 3 years I think. It is obviously the person doesn't have neurological disease (the severe, degenerative one), I do not say person doesn't have problems. Sure he does, I also have them. But they are not the kind EMG would show in the first place and that is a known fact. What that means is that sixt EMG shows only that the person still suffers from heavy anxiety from ALS/MS and nothing else. EMG may be clean, but the believing it is still not there and as many pointed out, EMG won't calm your mind.The more I read and the more I experience (I am not immune to this phenomen), it is really a sad phennomen. The twitching thing. I am at all not saying it is all in the head, I strongly believe it is NOT. But what the BFS bring with it is so destructive it reminds me of paranoid schizophrenia. I mean, if 5 doctors, EMG's, people here, FAQ here can not tell you you don't have ALS, you have to have a serious mental problem to begin with. Me included (I am no exception, I am just observing me and others here from their posts). The paranoid component seems for most to be lasting from months to few years, so it is not permanent, but the ALS obsession seems kind of fascinating.I am HA person and as such I was "obsessed" about having various cancers etc. but up to BFS problems I didn't find such extreme inability to believe things/facts. I really didn't. I was obsessed by colon cancer and so were others on the forum, but after coloscopy most of us got rid of the idea. It was just not there. The BFS, partly in the nature of the beast and the nature of the disease we fear, is much more severe. The fact is in coloscopy if there is no tumor and the doctor doing it was not drinking, you have no tumor, period. Here things are more vague with stories someone developing ALS after I don't know how many years and EMG's (maybe he got it like every 1:100.000 does and he didn't have it all those twitching years!), but many people seem not to be able to move on. It is kind of frightening.I consider myself a little more unlucky than most because the doctor didn't say I don't have it, he found some atrophy but he didn't know where it is from and anything was possible to him, but BFS was unlikely and such stories. I really didn't get any confort from the doctor and having some old atrophy I refused EMG because I believe it would show some abnormalities and I would be in even worse state than I was. But anyway, many people here seem to have good neuros, telling you that you don't NEED EMG and certanly you don't need 10 EMG's and a clinical every 3 months if nothing was wrong in the first place except the neuro symptoms we all share here.I mean instead of congratulating yourself that the 5th EMG was clear, I would really and hardly think in myself what does that mean, how long the peace will last this time and if it is not time to leave neuros alone. Not becuase you don't have something real - I am yours - I know how really miserable I feel... but I don't believe any new "all clear" will cure your mind that is also severely affected by this ilness and rational thinking sesms to be impossible. I think the opposite, the more neuros you visit and the more EMG's you take, the longer will take to get rid of the ALS/MS idea. Of course you can get it once in life, but you don't have it now.THat said, I realised I was to afraid at my neuro visit and I made a fatal mistake myself: I kept asking doctor if I can have ALS and he said that I may. I asked if atrophy could be from ALS and he told me it could. My question was wrong, because you should never ask doctor if you can have something - he will always tell you that you can. The doctor also made a mistake. He should add to the "you can" statement, another one: "It is higly unlikely with such symptoms!". And he shouldn't say I can not have BFS, but that is another story.1. So never ask doctors if you can have something, because you always have and you are pushing him in a corner.2. Don't repeat the tests as this is obsessive compulsive behaviour. I didn't go to neuros every month but I kept photoing my hand if there is more atrophy. After 16 months I still think there is more, but it is hard to tell on a picture. I found out I won't get answer in pictures and pictures won't calm me, they just made me anxious, because on some picture shadows are different etc... If my hand stop working, I'll know without pictures.Don't take that personally, but that is my experience and from what I am reading and what I have a degree of made me realise this things go much deeper than twitching and pain, it seem to make people temporarly insane (or put it mildly, paranoic). I think bodily suffering is enough, no need to have the mental component with it for so long.Sometimes I think there are 2 diseases: ALS and "thinking you have ALS". Of course the first one is beyond terrible, but the second one is not light either. At least it seems to go better in time.
Examining Repeated EMG Results
- Thread starter jerryTwo
- Start date
Great post, Jerry - I agree with you fully.Most of our neuros just ordered EMGs, because they knew that we wouldn't be calm without them. My neuro said "I know you have googled, and the only way you'll think you're okay is if you have an EMG". He also said "I'm 95% sure you're okay, but the EMG will make me 100% sure".But, really - the problem isn't only with us. It's the neurologists who want follow-ups. So many seem to, "just to be sure". I wish neuros would just say, "come back to me if anything seriously changes" instead of having 6 month follow-ups.I refused to even follow-up with my neuro after my EMG. I just didn't want to deal with doctors anymore. My EMG was enough. While I still have bad days where I wonder if I should have gotten a follow-up, thanks to this board, I'm usually realizing my symptoms are no different than anyone else with BFS.Mitra
I also agree with you fully. I've read hear about many people neuros want them to come back in 6 months and then again in 6 months... that is not reassuring, becuase this is making people believe twitching can go on for I don't know how many months before anything shows up. And to my knowledge, this is not the case at all...I think it is good to have EMG. I just don't think 6 of them needs to be done. One is enough. I like to think if I survived without one for 16 months I can survive further 
Absolutely Jerry. You obviously never needed one to begin with. If you had had anything degenerative, you would have known by now. I have full confidence in saying that.That was my first thought with all this. If I survived a year with the twitching, then I could reassure myself that it wouldn't be anything too bad. But, I had a panicked moment, and felt like I had to have an EMG. And just like the many people on this board who have had one, we all seem to have doubts about them afterwards (e.g., maybe it was too soon, maybe they didn't give me the full results, maybe they didn't do all the muscles they should have), so I'm not even sure they're that useful to give you peace of mind. I had about an hour's worth of peace of mind, before the anxiety kicked in again. The only TRUE thing that gives you peace of mind in this process is time. With time, you get used to your twitching, and you get more and more accepting of the fact that it is part of your nature, and not something horrible. My arms were twitching like crazy yesterday watching TV, and normally I'd worry, because I'm more of a calf twitcher, but I'm getting to the point that I just stop and think "stupid BFS" and move on.But, I'm going to reiterate that I think it's faulty of the neuros to ask for 6 month follow-ups when they are giving a benign diagnosis at the same time. As we know, there is no way of really treating BFS, except maybe to reduce stress.Mitra
I agree. You seem to be similar to me, I also have this days so many shoulder and back twitching and some back ache and wierd crawlings I don't even dare to look at 
I am usually more "limb man" not a back/shoulder twitcher. And I was leaning on my left arm and all of a sudden like a electric outbreak my space between thumb and index in the aatrophied hand started vigirously twitching, very fast and very strong, like some energy discharge for about a minute. Now I can provoke it with stretching this muscle but it doesn't do it alone.There are many new symptoms (different intensity, places, speed), and I have to read my note I don't have ALS (that I wrote myself). Why should now a back twitching worry me if this is going on for 17 months, why is now different than it was. The fact is that it is probobaly not. I will soon break the barrier of even remotely hear somewhere that one twitched before other symptoms.I wish I could call a neuro and he would say to me: "Don't even tell me further, after a year and half, this is no ALS. Stop right now". Of course such neuro doesn't exist.To go back on topic, 6-month returning because neuro told so is a sure way for the panic to spread. This causes uncertanty for nothing.
I am usually more "limb man" not a back/shoulder twitcher. And I was leaning on my left arm and all of a sudden like a electric outbreak my space between thumb and index in the aatrophied hand started vigirously twitching, very fast and very strong, like some energy discharge for about a minute. Now I can provoke it with stretching this muscle but it doesn't do it alone.There are many new symptoms (different intensity, places, speed), and I have to read my note I don't have ALS (that I wrote myself). Why should now a back twitching worry me if this is going on for 17 months, why is now different than it was. The fact is that it is probobaly not. I will soon break the barrier of even remotely hear somewhere that one twitched before other symptoms.I wish I could call a neuro and he would say to me: "Don't even tell me further, after a year and half, this is no ALS. Stop right now". Of course such neuro doesn't exist.To go back on topic, 6-month returning because neuro told so is a sure way for the panic to spread. This causes uncertanty for nothing.SamanthaRiddle
Member
Yesterday all of the twitching gremlins took their trampolines and headed to my back. I was setting next to my wife when she suddenly said,"What is that?" It was my back thumping so hard she could feel it. After eight years AlS does not even enter my mind. I had the tests with the neuro at the beginning of course he cleared me. He said 90 percent is all you will get from me on anything. Of course eight years has cleared me of the other ten percent. I had a good friend die of AlS. I can tell you thumpers in the back and 99.9 percent of what you hear on this forum has nothing to do with his experience. It is interesting I have known of three people with AlS and non of them suffered from anxiety from twitching before they were diagnosed.
Thanx for your experience. Seems like there are two excluding diseases: either you have ALS with no anxiety or you have twitching disease with anxiety.I guess back twitching is not that uncommon, it is a problem because you can not see it (or a blessing, I don't know yet).I guess your friend's problems were not twitching at all...
JohnnyRocket
Well-known member
EMG's are almost always excessive and unecessary for people in this community. For someone with typical BFS story, to view a clean EMG as some sort of "phew, that was close" situation is a joke, so I don't congratulate either. If anything, I would find it appropriate to comment that I'm happy he/she has found some relief from anxiety. Unecessary EMG's are nothing more than anxiety treatment IMO.
Johnny, I am glad once we agree I am also glad you beat this crap. I hope one day I will too. Now if I just imagine I go to neuro and show him my tremoring tongue when stick out of mouth and him saying: "Hm, I don't know, can be anything"... bah. (my tongue didn't tremor when stick out back when I went to neuro).When will I beat it 100%? I guess when I wouldn't care if this thing on my back now if twitching, tingling or something else, that's when. And when I won't care about any new wierd symptom that happens to me.
I am also glad you beat this crap. I hope one day I will too. Now if I just imagine I go to neuro and show him my tremoring tongue when stick out of mouth and him saying: "Hm, I don't know, can be anything"... bah. (my tongue didn't tremor when stick out back when I went to neuro).When will I beat it 100%? I guess when I wouldn't care if this thing on my back now if twitching, tingling or something else, that's when. And when I won't care about any new wierd symptom that happens to me.NordicPrincess
Well-known member
I sounds to me you have come a LONG WAY Jerry, to truly accept and believe you do not have ALS. I now you have been very afraid of ALS, and I'm so glad to read you hare not any longer, and to not take pictures and stuff to try to evaluate the situation. Good job!! I have never thought ALS is the case, because of all the sensory symptoms and no obvious clincial weakness, and to be honest I find it strange that so many people in here obsess about ALS. I know that would be the scariest outcome, but there are SO MANY other deseases that fasciculations are a part of, and also in healthy people..fasciculations are not spesific of anything, think of it as a symptoms like pain..can be the case in so many deseases or without a desease..I'm now under treatment for possible chronic Lyme (three diff ABs..) and soooo many people at Lyme forums have pictures like many of us in here..And at MS forums...And anxiety forums..And ME/CFS/fibro forums..And so on..Well, I hope all in here can stop believing in having ALS, because that stress/anxiety will not help at all..easier said than done, I know, but still...