EMG Test Reliability Worries

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InkedMama

Well-known member
After reading Jros posts and recent neuro visit and him her stating the emg may not pick up symptoms even when u have them put a damper on my day. From the Mayo, Cleaveland Clinic, my own cheif of neurophysiology and people reporting on here the emg is VERY SENSITIVE TEST In helping identify a disease or not. When I read info such as Jro posted I find it misleading and worrisome to the many that have had clean emgs. I myself have been struggling lately with a flare up and little tongue tingles on tip. I was told those are not true fascis and refer back to my clean emg. 10 muscles tested in which i was told by ccf neuro plenty esp after widespread twitching. 11mo into this no changes nor weakness therefore no reason 4 another emg u would think til I read Krackersoness post. I am not going to dr to dr to find something thats not there thats not my attention but i dont like hearing a emg isnt reliable even when symptoms are there. Infact I think u meant to refer to Ncv maybe. ThAt post has really made me want to go out and get another emg but i think being im going strong n no weakness its pointless. Lovely
 
I think a lot of doctors are going to feel differently about medical practice... I'm not a doctor, but Itend to believe that if you poke a muscle and somethings is wrong with you, you'll find something there. When someone has a muscular disease, I think it's probably so obviouous in physical examination that you probably don't need even need an EMG for the diagnosis other than to confirm the doctor's diagnosis... So I wouldn't worry that much about the need for another EMG... hope that's helpful.
 
LovelyHere is what you should do......phone your friend who you speak to every day......let him tell you that your ok.Also think of this....if i had been twitching for 11 months and have clean emg's what would you be telling me???? You know what you would be telling me, you would be telling me to stop being silly and after 11 months i would have some kind of weakness. Remember your EMG report and what you said at the end of it....YOUR GOLDEN ! Chris
 
I asked how I could have had two prior nerve condution studies (one three weeks before the one his office gave me) and neither showed a single problem. He had no comment as they were obviously not done properly and he did not want to say this since it served no useful purpose. The one done three weeks prior was done at a University Hospital and the other by a Johns Hopkins trained neuro. I don't mean to scare people but this is what happened in my case. A third nerve conduction study and a muscle biopsy are the things that finally pointed to a problemis this what you guys are referring to? it is ncv ?? i can not find your reference to the emg
 
Lovely, I would not read into JRO's visit with Dr Engle. I find it a little strange that he "doesnt think" JRO has ALS. What have been told is either there is evidence of it or not, I have been told by the Neuro's I saw when I asked them, "so I do not have ALS" one guy said no, then I followed with "could it develop into ALS" and he said something like "yes, and it could for me, and that is what your odds are". Dr. Engle could be a great doctor, maybe his bed side manner could use a litte fine tuning, who knows. 11 months of twitching, no weakness, no ALS.
 
I really regret that my situation raises questions for others. I think my situation may well be very different from others here so just because I have the results I have doesn't mean yours are in question. Here are the facts of my situation.I saw a Johns Hopkins trained neuro with a PH.D and an MD for an EMG and nerve conduction study in August about one month into the twitching. He saw no evidence of ALS and no abnormalities on the nerve conduction study. I passed all the strength tests.In early October I had another EMG by the lead EMG guy at USC University Medical Center. He is the guy that the first neuro recommended and another neuro at USC also recommended as the best. They said EMG is his specialty and he trains other doctors and is very good. This guy said, "You do not have ALS." His reported stated that no abnormalities were seen on any of the tests (EMG and nerve conduction).Dr. Engle's neuro did another nerve conduction and EMG on October 22nd (I think that's the date) and said I had many abnormalities on the nerve conduction and no abnormalities on the EMG. My muscle biopsy showed a few small areas of reinnervation (not a lot but a few). Dr. Engle seemed to be saying that it was not enough to show on an EMG or to show up as any dectable weakness. He said the muscle biopsy is much more sensitive than an EMG, meaning I guess that the problems show up first in the biopsy and then the EMG. I know it scares people to think I could be having symptoms like twitching and have reinnervation and three normal EMGs but this is exactly what happened.What may reassure some of you is that I am in extreme discomfort. It is probably due to the nerve damage that is causing the nerve conduction problems (I think he said this is sensory nerve related). If you are not in this much agony, your problems are probably not as severe or in the same category as mine. I still have not lost any muscle strength and the strength report I saw on myself said 5/5 for muscle strength for all muscles. I think this is good but I didn't ask.On the ALS front, he definitely did not say "I know you don't have ALS." When I asked about ALS, he just said I don't think you have ALS. He seemed annoyed with the question. I asked why and he said because ALS does not involve the nerve conduction abnormalities you have and does not have the autoimmune problems you have that can cause the symptoms you are experiencing. I asked why other doctors say a clean EMG means no ALS. He said, "I don't tell people that." I think he meant he does not make 100% guarantees.I think the bottom line here is that the sensory nerve tests they give you in the doctor's office are not highly sensitive and that the nerve conduction studies can be easily messed up. Also, you can have nerve damage that is not picked up on an EMG but is picked up in a muscle biopsy in the early stages and four months into twitching. But this still does not mean you have ALS. Other things like peripheral neuropathy involve denervation and can be treated. If you are not in pain, then it makes sense I guess to not have a muscle biopsy. If things get worse, I think you'll know it and can have the biopsy then. If things do get worse, I would suggest a muscle biopsy because it's just a few stitches and two weeks of soreness. It can also point to a problem you might want treated so you don't cause further damage. Without this muscle biopsy, the doctor would probably not be in a position to put me through the risks of certain therapies that may help me. You need proof of a problem to start treatment and the EMG did not provide the proof. I knew something was wrong so I kept pushing for the tests. A muscle biopsy may also provide additional reassurance if it comes up with no damage shown.If you feel fine and are just worried, I think you are fine. My posts are really for those that know something is wrong with their bodies because of real agony from the symptoms. I want these people to know that they don't have to stop at one clean EMG and no clinical weakness and feel like nothing else can be done. Maybe more extensive blood work and a muscle biopsy are worth doing if you are willing to risk taking treatments to get relief and prevent future damage. When you are suffering, the risks of treatment are a no brainer because the quality of life issues are real and the fear of future damage is real.
 
what to believe???? is a clean emg after 4-5 weeks of widespread fascics safe or not......i am not comfortable with your posts Krackersones!!!! my neuro at the als-clinics said, that the emg is very sensitive and that the muscle biopsy is not more sensitive than the modern emg that shows very small als-related changes even before the fascics appear....what to believe now.i really think i am leaving this forum as it drives me crazy every time when i read such a post....
 
My symptoms are:Widespread muscle twitching at random times for a few minutes usually. Locations include arms, abdomen, chest, legs, back, feet, face, lip, and tongue (these happen once or twice a day and last a few seconds).I have a constant spasm/cramp in my left hand the same as Swift_TaySwift20 who posted a link to it.I have tingling, crawly, nerve sensations all over my body. The Klonopin calms this to some degree.I don't perceive any weakness. I can run up many flights of stairs (now even after the biopsy). I can lift everything I could lift before. I type at the same spead etc. I don't drop things or have trouble opening things.I had an extremely high ANA titre (over 2,000) and I also have abnormal levels of specific antibodies that I didn't write down but will try to get that info soon. I also had undectable levels of B6 and low iron. The doc thinks the antibodies are likely causing my neuropathy.When and if I try the IVIG therapy (I think that is the name), this could confirm whether the antibodies are what is causing my nerve damage.Krackersones
 
My symptoms are:Widespread muscle twitching at random times for a few minutes usually. Locations include arms, abdomen, chest, legs, back, feet, face, lip, and tongue (these happen once or twice a day and last a few seconds).I have a constant spasm/cramp in my left hand the same as Swift_TaySwift20 who posted a link to it.I have tingling, crawly, nerve sensations all over my body. The Klonopin calms this to some degree.I don't perceive any weakness. I can run up many flights of stairs (now even after the biopsy). I can lift everything I could lift before. I type at the same spead etc. I don't drop things or have trouble opening things.I had an extremely high ANA titre (over 2,000) and I also have abnormal levels of specific antibodies that I didn't write down but will try to get that info soon. I also had undectable levels of B6 and low iron. The doc thinks the antibodies are likely causing my neuropathy.When and if I try the IVIG therapy (I think that is the name), this could confirm whether the antibodies are what is causing my nerve damage.Krackersones
 
I understand the fear with getting new information but if you want to know more about what you are dealing with you could also have a muscle biopsy. It's not that big a deal in terms of pain/recovery. If it shows nothing, it will give you reassurance. If it shows something like it my case, it doesn't necessarily mean the worst although it is concerning certainly. I think this comes down to whether your symptoms actually interfere with your life. If it's just worry forget about the biopsy. If you have a progressive problem you will know it soon and can do the biopsy then. If you've had symptoms for a long time and they aren't progressing then you probably don't need a biopsy either. But if you are wanting something done because your symptoms are impacting your life, a biopsy is a first step in maybe getting help. I know I'm repeating myself but I think this is the takeaway from my situation. My symptoms make my life very very uncomfortable worry aside so I pursued this more intensely than some others.My symptoms came on dramatically not very slowly over years. They really got my attention so I went into "I'm going all out to find out what is going on" mode. I think you really do know if you are in this situation or whether you just a few mildly annoying things that you can put out of your mind.Krackersones
 
I'm with Edado on this one - who says that you had a test in June and it is a mistake that your one last week was different. Maybe you HAVE changed in that your body is coping with fascics, etc. My doc keeps running tests and guess what? They are not identical! I'm not surprised. Also, this stuff about reading about Jro's tests and thinking it means your tests were incorrect or invalid - what IS that? To put it simply - hey, she's talking about herself and her doc not you and yours. Her tests in no way can invalidate mine or yours - either your accept your tests and your doc's diagnosis or you don't. Fear? Do any of you actually have progressive weakness as in 'I can no longer lift my leg' or 'I can't hold a pencil'? ALS is a progressive disease - once the neurons start going they aren't miraculously OK ever again. It is a horrid disease but it is rare and you don't recover function in the affected body part. All you that are saying stuff like "last week it was this" and "today it's this" and "I had this for 6months but I'm am now tired after running 5 miles" - what part of 'a progressive neuronal death' do you not understand? If you had symptoms in your hand for months & months, you wouldn't be able to type at your computer with it by now.
 
LaurenCH,Do not give up on the site, in defense of JRO, if anyone is going to find the answers for us, it will be her, keep going JRO!I think you are at a point in your BFS when you really pick up on the bad stuff, and kind of brush off the good news, it is the same for most of us, we have been there. I had the first Neuro I saw say "you do not have ALS, no way" Two months later I was at a different Neuro. This stuff messes with your mind. I think your Anxiety over this is in overdrive. All of us on this site are just collectively trying to make sense of this, and sometimes what is written will upset someone, but we must air everything we learn. Unless of course you get diagnosed with ALS, I suggest you keep that to yourself.
 

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