Who Had/Didnt Have EMGs?

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splazoo19

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There's a thread a bit farther down about who has, and who hasn't, had EMGs. It seems as if lots of people get them, but in my naivite, I'm wondering why. Assuming twitching is the only symptom, and that other symptoms of much nastier diseases are pretty evident to a neurologist, why are so many EMGs being performed? They sound to me like torture and I assume they're not cheap (so patients and/or insurers wouldn't want to pay for them unless necessary). Are they usually given for people who have multiple symptoms? I understand that they help rule out some nasties, but I would think that a neurologist who sees an otherwise asymptomatic patient (based on discussion with the patient and a neuro exam) would feel that the test isn't necessary.Or maybe I'm just hoping so. I haven't seen my neuro yet for twitching, although I did briefly mention it at my last appointment regarding headaches. (He asked if I had muscle weakness, I said no, he said to keep an eye on it. I guess the neuro exams he did on me for the headaches and the MRI didn't give him reason to be concerned.) I go back in a couple of weeks for a headache follow-up and intend to bring up the twitching again and hope he says its benign without mentioning and EMG. Man, getting electrocuted and being used as a dartboard doesn't sound like a day at the beach to me.
 
EMGS are not torture, only mildly uncomfortable at worse. EMGS are not very expensive; cheaper than an MRI or CT scan. I am sure that you have heard the mantra: clean EMG=No A word, therefore if you are really worried that you have A word, and don't want to wait to see, the EMG is the only way to go. For many neuros I believe, when they see a patient who is very worried, obviously its their philosophy and judgement, probably rather than to make their anxious patient wait (and suffer mentally) they preform an EMG to reassure the patient, why not, if I was a neurologist I would do that for my patients.
 
I'm a computer programmer, and one of the most important lessons my programming mentor taught me was the rule of "motion disguised as a progress." Basically whenever a customer is hounding you to get a project done, all they are really looking for is "motion." They just want to see that you are working on it and that you didn't forget about them. So sometimes if you are way behind in your work, all you need to do is make some small tweak to the code and tell them to test it now and see if it made a difference.Deep down, you know that this didn't fix their programming issue 100%. But since you did some work and put the testing ball back in their court, at the very least you have made the customer happy and taken the onus off of you for a while. And voila, there you have it. Motion disguised as progress. The #1 rule when it comes to being a programmer. Everyone is happy when there is motion involved.My guess is that this is a similar reason why so many BFS people insist on getting EMGs. Deep down they know it probably isn't going to cure their BFS. But it probably feels better to be doing SOMETHING rather than sitting there and not knowing what the heck is going on with their body. So they tend to go to their doctors and ask for (or demand) an EMG just to rule out the stuff that the doctor already knows they don't have. In most cases it isn't the doctor ordering the EMG, it is the patient requesting one. The doctor already knows what the finding will be.From my experience most EMGs are just patients requesting motion disguised as progress. For a lot of newbie BFS patients, it's nearly impossible to just sit there and let their symptoms resolve on their own. They desperately feel like they have to be doing SOMETHING, and the EMG is the one tool they have been told might give them some peace of mind.
 
I agree with Mario. In my case even though I had evident twitching, since I had no weakness or atrophy and normal reflexes, my neuro thought an emg would be waste of my money. On my last visit, I have been having a persistant chest twitch he assured me that it was benign but to make me happy if I wanted him to he would do an emg. I asked if he thought I needed it and he once again said I had no atrophy, weakness and had normal reflexes but would do one to make me believe him once and for all. At that point I said no I did trust him and was done with the issue of an emg. He has given me his assurance I don't have the bad stuff and my clinicals have all been great and that is good enough for me. I just want to move past this and start living my life again and that is what I intend to do after almost a year of this. If I can help others do the same that is even better.Mary
 
I saw two neuros (actually I did not like the first guy I went to, so I only saw him once). For what it's worth, they both wanted to do EMGs to be safe. The first guy wanted to try all kinds of silly things (which is why I told him to fly a kite and went to a NM specialist).Why? I don't really know. Probably because I have insurance, and just to be sure. An EMG can rule out the bad stuff pretty quickly. If you are debating to have one or not, I'd say do it if you have the means. It's probably not necessary, but if nothing else, it was worth it for me for the peace of mind.
 
Mario, thank you so much for your response to my post you have been an inspiration to me in this healing process and your response to the post about " maybe there is a purpose to all this" really made me want to step up my game to use this to help others and forget about myself. I think you have helped me more then any emg that I didn't need would have. And now I am ready to take control!Mary
 
Thanks! I'd love to take credit for that, but I really just ripped off a Basso post with that response. If it helps, I'm glad it did (because that is advice that once helped me). But I certainly can't take all the credit for it. Your only job now is to go take that same advice and pay it forward to somebody else. Spread the wisdom. :)
 
No. I just chose Pennywise because I like jarring avatars that people will remember. For some reason Pennywise is a character that really tends to resound with people (for both good and bad reasons). I only chose him because I knew he would get a reaction. It has nothing to do with bfs, I've always just been an attention wh0re like that. :LOL: You may not know this, but when I don't have BFS in real life I am a comedy writer. If I found some way to compare BFS to an Anna Kournikova upskirt shot, I'd probably use that as my avatar.
 
Thanks everyone. I don't want to get an EMG, nor do I feel it's necessary--unless the neuro says so. The initial alarm I felt a few weeks back has greatly faded, mostly due to this here group of nice people. I haven't been testing myself like I did the first week or so except to look back at the end of a day and see if there were any disruptions to my routine based on an inability to do something specific, e.g., carry a laundry basket, inability to keep my normal running pace, needing to decrease resistance during my strength training, inability to open jars, bottles, packages, problems with opening doors, using keys, exhibiting less coordination than I usually do, etc. The other question I ask myself is, barring the twitching, is there anything unusual for which I would consider calling the doctor? Looking back, the answer is no. I take to heart the what-I-assume-to-be-facts that twitching as a symptom of The Disease That Must Not Be Named is minor or second-hand, the real possible symptoms are very noticeable, and that by the time one notices the twitching, it's very likely the other symptoms would already be present.The funny thing (not really ha ha funny) is that I started having the anxiety right after coming off of a terribly anxious time for another health issue, headaches. I went from slight concern about the headaches to full-blown, end-of-the-line, bury-me-in-the-backyard-next-to-Chip-the-Gerbil (may God rest his soul) panic in about a week. I was *obsessed* with getting an MRI despite the neurologist saying that he thought my headaches were migraines and that he'd be "very surprised" if I had a tumor. (Although he did think the MRI ordered by my PCP was a good idea.) In fact, he didn't even mention a tumor until I brought it up. The MRI came back normal, I felt immediately relieved, and then moved on to worrying about the twitching, some of which I noticed about a couple of months back but didn't pay much attention to it then.Of course, the neuro did an initial exam when I went in for the headaches and then a shorter one at the follow-up visit, at which time I mentioned the twitching. He asked about noticeable weakness, I said no, he said keep an eye on it and seemed pretty unconcerned. At next week's headache follow-up, I'll bring it up again but will not mention EMG. At this point, and unless things change, I'd take the neuro's word for it that the twitching is benign. Now that I'm pretty sure the twitching is benign, I've given myself persmission to turn my anxiety back to the headaches, despite having one-and-a-half neuro exams and a relatively clean MRI (the neurologist and the radiologist noticed some vascular changes but the neuro said it was within normal). I'm kind of paralelling what some people do here, i.e., have anxiety despite medical evidence and professional opinion to the contrary. The MRI *could* have missed something. The damned insurance company *should* have approved the MRI with contrast just to be sure. The radiologist and the neurologist *could* have independently misread the scans. My neurologist is going to hate me.Assuming I eventually convince myself that my headaches are, in fact, benign, I'm soliciting suggestions as to what I should focus on for my next health crisis. Leprosy?Mark[edited to add] I'm not belittling people who get EMGs. If it gives you peace of mind, go for it. I'm going to discuss the MRI more at my next visit and see if it should have been done, or should be done again, with contrast. Sheesh, some people are never satisified.
 
I want an EMG. Having survived heart failure twice (and being told there was NOTHING wrong with my heart by two top cardiologists before I found the right one to run a 200 dollar test and diagnose it, I should have been dead) and having kidney disease that I had to diagnose myself with based on blood tests (that my first doc IGNORED) I realize I am my only advocate, and because I had a 1 in 10000 shot of developing the kind of heart failure I had, and even less of a shot at my kidney disease (both that are now treated by reputable physicians) I know that one doc saying he "thinks" I am probably ok will never be enough for me.I have no sensory issues, just widespread twitches that came on out of no where, and makes my toes and fingers move and leaves me in a difficult position to drive a vehicle, etc. I've been a pin cushion for 15 years and if a doc sticking a few needles in my muscles is what it takes to rule out, or rule in, the nasty, I'm more than willing to oblige, in fact, I'm pressing for it... because I know my body pretty well after all of this - and because I pay for insurance every month, so I should be able to obtain testing.HOWEVER those who opted not to have EMGs are equally respectable. To each their own, I'm just far too anxious having gone through everything else to leave well enough alone in a situation like this :)Brandy
 
I too had an MRI with contrast not because he was trying to detect a brain tumor but because he was trying to see if maybe I had ms and the contrast would show an active lesion. I was also freaking out about brain tumors at the time because my mouth had been twitching for two weeks non stop. Surprisingly, they did discover I had a brain, but everything else was normal. Believe me, if you had a brain tumor you would not need contrast to see it. In fact I did not want contrast because I was afraid of what an unknown substance injected into my body might do in the long term. And you think you have health anxiety? Believe me I've had every disease in the book the last 11 months, even though I really did'nt it was just me being hyperanxious. WIth the help of this board, and my neuro, I am now able, even without an emg, to finally move on and I hope put others minds at ease. But I am pretty sure you don't have a brain tumor, I think the radiolgist and the dr would be in pretty big trouble if they missed something like that!Mary
 
I'll second the comment that even an Open MRI can be hard for a claustrophobic person. I was supposed to get an MRI about three years ago (for, surprise surprise, a brain tumor I thought I had). I knew I was a claustrophobic, but I had no idea how claustrophobic I was until I got into an MRI machine. Um, no THANK you. Not with that stupid cage over my face. Do you think I want nightmare fuel for the rest of my life??I lasted exactly 45 seconds in a closed MRI before I wanted out.I asked my doctor to reschedule me for an open MRI, and she finally found one about 45 miles away. I went there expecting it to be daisies and flowers and waterfalls, but what I didn't realize was that an Open MRI is just as close to your face as the closed one. The only difference is that the sides are cut out so you can reach your arms out to the side.It actually took me a while to get used to the Open MRI, but eventually I got through it. I think what did it was having that tiny little bit of light I could see out of my peripheral vision. That, and my ability to reach to the side and touch the edge of the machine finally allowed me to get through it. But yeah you're right. An Open MRI is no picnic either. And no I was not a fan of wearing the Hannibal Lecter cannibal mask either. It is not something I would recommend to any claustrophobe, not if you can possibly avoid it.
 
Oh yeah and I'll never forget the MRI tech's comment after I begged him to let me out of the Closed MRI machine.I said, "Man that's tight in there. That sucks. Do a lot of people have a hard time being in there?"He just laughed and said, "You think that's bad. You should have seen the ones we used back in the 70's. They were about half that size."Um, no thanks. Thanks for your time.
 
Because first of all if you did have a brain tumor that did not show up without contrast your doctors would rue the day that they told you they didn't via their liability insurance. Secondly a mass would show up with or without the contrast. Like I said I didn't want contrast and my neuro said they did not need it if they were just looking for a tumor, they needed it to see if I had an ms active lesion. Great Just one more thing he gave me to fear, could'nt he just let me worry about a brain tumor and not MS? Thirdly I asked the technicians if a brain tumor or lesions would show up without the contrast and they confirmed the brain tumor would, old lesions would, but new lesions would not. So I let them do the contrast. So the main reason I truly believe you will not have to be mad a me is because if they ordered the scan without contrast they have maybe a bit more knowledge about these tests than we do and know what will and won't show up with or without contrast. I am also banking on the fact that they will not want to give you a big payoff for not calling for contrast when they should have! Also, The contrast part of MRI took all of five minutes while the bulk of it was spent non contrast. I'm pretty sure these doctor types know what they are talking about! :D)Mary
 
Well I'd likely bet that my neurologist thinks there is something wrong with my brain, but its not a tumor! When yours starts asking if you need do see someone for your anxiety , I think you will know that you have asked one too many questions! Suddenly I felt like my neuro actually might know what he was talking about!Mary
 
Thanks, Mary. Truth be told, my PCP ordered it with contrast, but the insurance company balked. More truth be told, my PCP ordered an MRI, and the lady at the PCP's office who writes up the orders said something to the effect that she'd request it with contrast because "they'll want it and you don't want to have to do it again." I don't even know who "they" is/are, but I figured if the receptionist thinks I need contrast, whom am I to argue?I'll swing this back to health anxiety in general. At my follow-up neuro appointment, he didn't say, "Other than some normal white matter changes, your MRI is clean. Of course, as it was done without contrast, you could very well have a brain tumor that the radiologist and I didn't pick up. Have a nice weekend!" But that's what I read into it. I'm going to have to clarify it a little further when I next see him. Plus, because I'm an idiot and don't learn from my mistakes, I Googled "can non-contrast MRI miss brain tumor" and, of course, I find out that it can. At least according to the person who has a friend who had an MRI that missed a brain tumor...I did find a post from an oncologist who opined that if a tumor is large enough to cause headaches, it'll be picked up contrast or no. But still, despite, a clean sans contrast MRI [sans being French for "without" in honor of Bastille Day] and a couple of clean neuro exams, I still need to shake that doubt. And I' had a headache today for about 12 hours until popping a couple Alleve, which doesn't help with anxiety. (Oh, and the neurologist said that brain tumors don't typically present with just headache. You need other stuff, too, to consider tumor possibility. But what does he know? He's just a neurologist who completed a fellowship in neuro-oncology at Sloane Kettering, a prestigious cancer center.) Man, I have some issues I need to work out.But thanks again to everyone for letting me vent. It's very cathartic for me.
 
Your are not alone in your ways! I did think the technician gave me a "look" on the way out of my MRI and I was convinced it was an OH my GOd I saw a tumor look! My friends tried to convince me there was no look but I knew better! Than when I had bone scan because I was convinced sore back meant spinal tumor, after we got done the tech offered me a chair and I knew she just felt sorry for me because she saw all the tumors. So me being so knowledgeable as I was about bone scans looked at the pictures on the screen when she was out of the room and saw that my spinal chord looked all black and suddenly knew I was dying, thus the reason for her offering me the chair. I later found out when I called a friend of mine who is a doctor that is how a normal scan is supposed to look. OOPS!Mary
 
Pennywide,Avatar..sorry? Please relieve my ignorance...! Talking in riddles to me....PS as I have said before..If you think you have the disease...then you most certainly will! ( and I am being as facetious (I hope) as the rest of you!)cheersRodger
 
There's a Stephen King movie called "It" which features a killer clown who murders kids in a town called Derry. The clown from that movie (Pennywise) is my avatar - the picture to the right--------------------------------------------------------->I did this because my Anna Kournikova upskirt avatar was banned from the website. :confused: Freaking puritans.
 

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