EMG Results: Clean, But Symptoms Persist

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GrizzlyLeader

Well-known member
I have seen a lot of post that says a clean emg means nothing serious. I had an emg after my calf had been moving or rolling like for about 2 or 3 months, then the twitching started in my left calf. Also had twitching fingers start. The dr. stuck the needles in all limbs, chin and toungue. The twitching all over is much worse now along with other really weird stuff, but is it possible that an emg was does too early not to pick up on something.
 
You will get lots of mixed answers to this question but the big picture is that a clean EMG at any time after twitching is a very reassuring sign. But even more reassuring is the lack of weakness. Some will not like me stating this as I've stated it many times before but not everyone has read all my posts and it is my experience. I have had three clean EMGs. The third one was done on the same day as a muscle biopsy (left quadricep). The muscle biopsy showed denervation/reinervation and some atrophy. None of these things have ever been picked up on EMGs or clinical exams to this day. My two quadricep muscles look identical to me. To this day, which is one year since the last EMG, I still have bodywide twitching but no weakness. So from my experience, you can have a clean EMG but still have some problems and damage going on with your nerves that cannot or is not for whatever reason detected on EMG. This does not mean you have ALS if you have problems that are undetectable by EMG. No one has told me I have ALS and in fact have said the opposite. However, I do have evidence that something is not right but then again when you have bodywide twitching you sort of already no that anyway. What it means and where it will lead is just educated guessing based on neuro experience and looking at all the evidence together. I get words suggesting a positive outlook for me and have from the beginning. So far, I have not progressed to any type of weakness but the symptoms are still there and do bother me without Klonopin.Krackersones
 
FantasticFurball,I am curious what you think of my situation. Three clean EMGs done by three different neuros --- all clean but then muscle biopsy showing denervation/reinervation on the same day as the third EMG. I am not trying to stir things up but how would you make sense of it if it was your situation? I do not think my findings mean I have a bad disease but it does suggest to me that EMGs can miss things. I wish I did not feel this way. Help me think differently.Krackersones
 
FantasticFurball,I am sorry you view my posts as constituting bad behavior and amateurish. I feel I am simply reporting the facts as they have occured and seeking input and believing that my experience may be useful to others. A lot of people including myself believed/or believe that an EMG will detect denervation/reinervation if there is such in the body part tested. My case proves this is not true or at least is not always true. I asked several neuros and an ortho if they were suprised by the clean EMGs and the muscle biopsy showing conflicting info regarding denervation/reinervation and they all said no. They said the muscle biopsy is a much more sensitive test and less subjective or operator dependent. I do not know why some people on this board think reporting facts is inappropriate. You are free to believe I am lying or that there are other facts that contradict mine and thus make mine less important but they are facts based on a real experience nonetheless. If board members continue to attack posters who post what they feel is anxiety provoking information, even if true, this board will have no credibility and thus will provide comfort for no one or at least no comfort for those who understand that a censored medium is not credible. By the way, I know there is no literal censoring but when you attack people who post factual info you do not like, they stop posting and thus you eliminate their experience from this board making it biased.I hope I do not have a serious disease like all of you and am reassured by many other facts in my case. However, there are other nervous system problems that involve twitching and I think knowing as much as possible about the nature and limitations of the tests many here get can be helpful.Krackersones
 
My dear KrackersonesBefore posting, you have to take a look inside yourself. Do the person in need really find your everlasting doubts usefull? I mean. If a people need some calming advice and reassurance, is it really the best way of helping, when you say: "hey, nothing is certain - look at me..." I think not. I guess you are on this board becourse you have a benign dx? I think its pretty much safe to assume that most people on this board got some kind of a green light at the doctors. So did you. But you are still questioning, still spreading doubts on this board. For what reason? Is it the best way you can find reassurance? I hope not. If you dont have BFS then perhaps this board isnt for you at all. But that isnt the case is it?If you really like to question the tests and methods used by professional doctors then I would suggest that you as a minimum start your own threads and dont answer people in need with your doubts and maybes. They dont need that. Selfness can be constructive in small doses, but at some degree you have to think on others instead of your own condition all the time. Is it really so hard?
 
I do not know what I have and I take the "BFS" diagnosis to also mean a sort of "I do not know" diagnosis since it involves no knowledge of cause or process involved. When people ask questions, I assume they want information not just reasurrance. What good is reassurance if it leaves out relevant information. Do you really think most people come here for blind reassurance? I guess some do. I think that type of reassurance is useless. The information I provide does not have to send someone off the deep end. It is just information that makes things a little less certain maybe than they would have hoped but it is factual.Maybe posters should state that they only want reassuring information and then I will not respond if I do not have reassuring information alone to give. I am a realist I guess. Wish I wasn't. Life might be easier.I get many pms from people who do appreciate my straight talk. You cannot please everyone.Krackersones
 
I just want to underline that you cant take your own case which apparantly is a "maybe-case" (your own words) and then espect it to fit to others situation at all. The vast majority of people here got a clean bill of health as they are dxed with BENIGN twitches. Benign means harmless. Perhaps you are running yourself nuts while you are using your own body as a subject for private investigations as you just wont accept the benign diagnosis, but please dont involve newcomers with your own misfortune. It really does no good at all. Perhaps YOU wont accept the benign course of things but 99,99% of this board has no reason not to. Im not saying that you should avoid posting. Im just saying, that it may be a good idea not to involve anxious newcomers with your own anxiety. It seems like you got some satisfaction everytime you post "open-enders". And for some this it not usefull at all. Please think twice before posting. How usefull do you think it is for a nervous wreck to read some nonsens like "no benign dx is for certain" or "emgs can be done years ahead in vain" or "the neuros dont agree on things" ?
 
Fox2run,If the information I provided had no possible benefit I would agree with you but that is not the case. Knowing the reliability of tests helps a person decide if and when they want to have it. These tests are not free for many and many might want to know what they are getting for their time and aggravation. Knowing the certainty of a diagnosis helps a person decide whether they want to pursue other tests or a second opinion since a different opinion may lead to treatment and improved health. If there were only two things a person could have BFS and ALS, then I would totally agree with you but there are other things that could be going on and none of them are easy diagnoses. Some people here want the benefit of others' experiences so they might be able to use them to their advantage. I find it very strange that you would think I get any satisfaction in telling people about the uncertainties I uncovered in my experiences with neurological testing. I did not pursue more testing after being told I had "BFS" or "nothing wrong at all" after two clean EMGs because I am crazy or have an anxiety problem or want to use my body as an experiment. I simply went to a doctor who I thought had more experience in the area of my situation and ended up learning a little more. This is really not that uncommon. I am one who thinks knowing more may help me although I know this is not always the case. I also think someone else (not everyone and it is impossible to know who will and who won't) might benefit from my experience. I greatly appreciate others allowing me to benefit from their experience and I hope someone might benefit from mine.A good analogy involves breast biopsies. I have had a few. I learned not from my doctors but from others who had benign biopsies that later turned out to be cancer that sometimes a needle biopsy is better than having an entire lump removed because a needle biopsy is imagine guided and thus the doctor can't miss the suspicious area. If they remove a lump sometimes they take out the wrong thing since lumps are hard to distinguish from one another. I would have thought having the whole lump out would always be better. This information was not reassuring about the lumps I had removed but the information helped me make better future decisions and I was grateful for it even if it was not information I hoped was true. I did not think the person sharing her story was getting satisfaction from causing me anxiety or involving me in her misfortune. It would never cross my mind to think that. Finally, whenever someone posts their experiences, they are not doctors of course and you have to run what they say by your own doctor and then go from there. However, having some good questions to ask will usually serve you well. Most people on here want to make the most of their medical dollar and make the right decision regarding testing for their situation. The more information they have, the better they can do this.Krackersones
 
You simply dont get it, do you? All things could be wrong with everybody all the time. You could have cancer, hiv, plague, weak heart, ebola and whatever. But its simply just not constructive to mention these conditions to a nervous guy who need just a little bit of reassurance in order to trust the benign diagnosis that - in the end - is a very likely diagnosis. (Almost 100%). To question the quality of emgs and clinical tests may not be the right answer to these first-comers who need help. Especially on the mental side of things. If you where afraid of some kind of cancer, and went to the doctor he could examine you and say: "no cancer". Or he could examine and say: "no cancer but I have seen a lot of well hidden cancer that killed people in the end." Its not hart to figure that the last sentence really wouldnt do you any good. The same with this stuff. When you say that emgs arent 100% or BFS isnt a 100% diagnosis, you do nothing but fuel panic. But Im not sure you can understand it, as you are too affected by your own doubts on the matter. By the way: this is a BFS-board. If you dont have BFS, I would suggest you find another board, as this one is for BFS-sufferes alone. Meaning that the folks around here, have got a benign diagnosis. If your twitching arent benign, then find another board please.
 
Fox2run,Define a benign diagnosis for me. Don't tell me it is when a doctor says it is benign because doctors have told me that too. I think your post acknowledges that the most anyone can get is a "probably benign." This is what I have. But you think I don't belong here. I asked more than one doctor and got multiple types of answers. This is not a big surprise. Most people do know that medicine is not an exact science and often doctors have differing opinions. Also, I am not the only one here with slow nerve conduction on nerve conduction velocity tests nor I am the only one with findings of denervation (RainCat and simon also have such findings). I believe the cofounder/founder, Gary, also had fibrillations on his EMG (which are related to denervation). I have had two neuros tell me my problems are probably immune-related and others have been told this as well. Because they cannot tell me 100% that nothing will ever come of my symptoms to make them 100% not a problem does not mean I am any different than many here. I just press them for what the uncertainty is and what they think my problems are caused by. Like you said no one has 100% certainty. So again, I ask you to define who belongs here since you are suggesting I do not belong. I want to know why you think I do not belong so others who fit in that category can also be likewise instructed.It is good to know the limitations of tests so you know whether you might want to take certain precautions or preventative measures. For example, I am taking a lot of vitamins and amino acids (many by prescription) to help support better nerve function. Those with continuing symptoms might want to give these a try but might not if they thought that an clean EMG meant 100% nothing was wrong. Also knowing that if things get worse, you might want to pursue other testing and not just assume everything is 100% ok. Early action can make a big difference.
 
JRO, I have to agree with Fox on this. The original poster is asking a general question about EMG timing and ruling out "serious" things. Instead of simply saying what everyone knows to be the case (that its not too early to get the emg once twitching has started )and providing appropriate reassurance, you launch into your personal story of clean emgs followed by an irregular biopsy which by the way did not provide any exception to the rule above since you don't have a "serious" condition or one of the big two conditions that people on here are fretting about when they wonder about EMG timing. I'm not trying to be personal or overly critical here but your posts consistently open the door to uncertainty and seem to implicitly and explcitly encourage newbies who have been CLEARED BY NEUROS to seek more medical tests or consult medical literature in some hope of finding an elusive answer to something that, no matter what it could be, is at its root something benign and NOT SERIOUS. I have no issue you with you discussing the oddities of your own situation, but you seem to bring it up as an example to newbies or people who have just had a great neuro appointment that the doctors and tests don't know everything because they haven't figured you out, the suggestion being therefore the docs or test results may also be wrong about the poster or newbie. Whether you intend it or not, you're adding uncertainty that is based on your own individual case (which again points away from anything serious) or your own medical research interpretation which as well meaning as it may be, is not professional medical analysis.
 
The poster asked if an EMG can be done too early to pick up "something." My experience says it can. I am just reporting the facts of my experience and what the neuros I saw told me. I had this same question when I had three clean EMGs. I wanted to know what the clean EMGs meant and did not mean. I am sure some do not like my responses but many appreciate them including the poster here who emailed me personally and told me so. Of course I do not claim that any of my opinions are "professional medical analysis" and do not think I ever suggested as much. My information is just like everyone elses. It is based on what happened to me and what my neuros said about it. Nonething more and nothing less.I think many of you underestimate the mental state of many on this board. Some of course are on the edge and maybe anything but "I'm sure you will be totally fine" is all they can handle. However, others do want to benefit from others' experience since many doctors are not that familar with our symptoms and possible causes and because things can and do change as time goes by. My situation is not the only one on here that has evolved over time but fortunately not into anything serious but just in terms of new information about what is happening and what may be the cause. You cannot know what a poster really wants to hear unless they say "don't respond if what you tell me is not totally reassuring." If they don't say this why should anyone assume they don't want all possibly relevant responses. Then they can decide whether to ignore or take in the information provided.
 
JRO- read her post again, she's asking about "serious" things. She's looking for reassurance that the emg wasn't too soon to miss the dreaded stuff. She's not asking about autoimmune abnormalities, additional blood tests, dennervation, reinervation, intervening, convoluting, reinnervation or any other oddball possibility. Again, your planting seeds of uncertainty in people that are seeking assurance over BIG things.
 
I really do understand your point of view but it is just that--your point of you. I disagree that my response was not helpful and so does the poster so what is the problem? People need to recognize here that not eveyone sees things the same way or wants the same info. No one can please everyone or be certain they are giving exactly what a person is looking for. If you learn more than you wanted to know that is a risk of asking a question. I face this risk everytime I post or ask a doctor a question. Believe me, there are things I did not enjoy hearing and maybe in the end caused me nothing but worry but that is impossible to know unless looked at in retrospect. Also, what is a big or serious problem to one person is not to another. Again subjectivity is involved. Some people want to get a lead on any possible nerve problem while others don't care unless it puts them in a wheelchair. Different people will see it differently. For me, I am relatively young (38) and if I can be aware of a neuropathy/nerve problem and possibly do something (like take prescription supplements) to possibly prevent them from getting any worse or even improving them I want to do it. This option was not given to me by the first three neuros because their tests did not reveal any need for it and especially no need for insurance to pay the cost of it which is over $400 a month. I knew something was going on so I pushed a little more. I will never know if this was worth it or not. I can't take and not take the supplements to see if there is any difference in long term outcome. I took a chance on getting the info. Some say this makes me crazy. Again, their opinion.
 

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