Questioning an EMG Decision

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DesertKnight

Well-known member
Hey all,I was just wanting to get y'alls opinion about something. I was totally freaked out when I first joined this group, but between the reassurance I've found here as well as from my GP and chiropractor I'm wondering if I really want to have an EMG after all. Yes, I twitch and buzz everyday, but I have no weakness or any other symptoms for that matter that send up a red flag. I know my scoliosis specialist wants me to see a neurologist for some leg pain I've had for years, which I'm not opposed to, but if my clinical exam goes well should I insist on an EMG? I've been through so many tests, spent so much money, and I'm tired of being poked and prodded and dealing with the anxiety of just being in a doctors office. I don't need the EMG for my own reassurance, and unless the doctor just thinks it's a must I don't really want to mess with it. Any of you out there not have an EMG and have BFS? Any of you have the EMG and think it was a waste of time and expense? Let me know, please. I appreciate it! ~Frances
 
Hi Frances, I am almost 15 months into this and I have not had an EMG yet either. I have only had a cervical spine MRI and bloodwork. The bloodwork was also only very basic. I am currently waiting on more extensive bloodwork results. Neither of my two neurologists even mentioned an EMG to me and in the beginning I was twitching like 2000+ twitches a day. They didn't seem too concerned because I had no weakness and still do not. I am having more sensory issues though which I have read on here that that seems to pop up about a year into BFS for some people. I too would like to know if an EMG is something I should pursue. I know what you mean, it just ramps up the anxiety to be tested for things all the time. I just thought you might like to know that I have been going through this for almost 15 months, no EMG and doing fine. (Well that seems to change everyday... hahaha..it's a mental emotional battle for sure that I don't always win.)Tanya
 
Tanya,Thanks for your reply. I've also had lots of labwork, and everything is totally normal. I haven't been tested for Lyme, but I think that's about the only test they haven't run. My twitches are so widespread...one in my thigh, one in my arm, one in my foot...they are very sporadic and so far I've only had hot spots last a few days at a time before they move on. Some places I twitched in the beginning haven't acted up in weeks. This is part of the reason I've calmed down so much, knowing that the nasty stuff doesn't act like that. I have wondered if some of the pain in my leg I've had for the past year is related to this whole BFS thing, sometimes it would burn, cramp, and I'd get the pins and needles. Ironically, since the twitches started I've been pain free. That part has me puzzled. My anxiety these days is more related to the pure aggravation of this weird disorder. I love the days its calm and I just want to tranquilize myself the days its flared up. Those are the days I just try and stay busy all day so I'm not so preoccupied with all the sensations. I know they use the EMG to rule out the bad things, but really, if your ONLY major symptom is widespread twitching I really don't know if its warranted. ~Frances
 
Frances, I get them widespread too. It all started with an eyelid twitch that I dealt with for years (episodes) then last July, I was under alot of stress...losing a house, husbands job, living with elderly grandparents, two huge moves in one year, going to school myself and homeschooling my 4 children. One night I noticed i was twitching from head to toe, it scared me so I googled and went into a downward spiral. I thought I was dying, layed around crying everyday for like 3 months straight, couldn't sleep, horrible nightmares, panick attacks....jerking muscles to go along with the twitching. I got pregnant with my 5th and it slowed the twitching down enough that I got a hold of my anxiety and decided to fight. I found this site and it helped sooo much. I just had my baby in July and the twitching is a little more again, but not like in the beginning. I am probably at about 500 or so a day,.... I don't know, it could be more, it's definately almost gone sometimes(rare) My attitude has changed a lot about them. I don't fear ALS anymore but sometimes fear that it could be something else weird. Even knowing it is benign... the twitching can be so bothersome for me that I just want to cry and sometimes just wish i didn't exist. I get it head to toe!! Twitching and vibrating. I am just now starting to get some cramping and I am getting weird hot cold sensations on my leg. Like I said I twitch head to toe everyday, somedays are calm some days a re a firestorm. I have a lot of trouble with both hands all fingers and my face and scalp. Also, my legs both calves, shins and feet and toes are going almost non stop now. I HATE it!!
 
Oh I should add that I was going to school for medical coding and I was in the disease processes and I just started having horrible health anxiety about it all. I pretty much flipped and thought I had everything I was reading about. LOLOh yeah and to go along with all the common regular spots for me I also have the random popping going on at the same time all over my body..yeah it pretty much sucks... :confused:
 
Hi Frances, I got an EMG but only because I nagged my neuro for it...he didn't want to do one...but I was such a basket case I begged for one...it was all clear...it didn't really help my anxiety...actually I think it upped my anxiety waiting for it and thinking the worst..so I say if your happy....keep doing what makes u happy..if that means no EMG so be it.... :) shannon
 
My opinion....An EMG is for some, but not for everyone...to be honest I wish I had never pushed for one...its really not a fun test...its expensive...and the anxiety I felt waiting to have the *beep* test done probably shaved 5 yrs off my life :eek: Do you need and EMG....if your clinical exam is clear...nope..you do not...it will tell them nothing except if they do your arms, it may tell them you have some carpel tunnel....other then that...it would be clean...The question is...does your head need it...do you really need to know you have a clean EMG to completely move past your fear of your symptoms?? But other then that..it would be a waste of yours and your neuro's time, and a waste of money...I've read your story..you can bank that you are one of us.Take careRobynn :D)
 
To be honest I don't think any of us should be getting an EMG. At least not unless a doctor specifically pushes for one. Once you start down the EMG path you start mentally convincing yourself that maybe something actually -is- seriously wrong with you. And once you start down that path it is a hard road to come back. Because once you have one EMG you start to think "Well maybe it was too soon". or "Maybe I should get another one." Or the ever popular "What if it was positive and they just didn't tell me." Once you start down these roads you are way far gone into health anxiety and from someone who has been there before, trust me, you don't want to be there. The absolute worst thing you can ever do in BFS is try to self diagnose yourself.If you want to look at the EMG question from an even more logical perspective, look at it this way. What does an EMG really tell you, anyway? There are plenty of people here on this board who had "dirty" EMGs, and it didn't mean anything at all. They are all just fine. An EMG doesn't specifically tell you that you have so and so. And even if it did tell you you had so and so (which it doesn't) what would that mean anyway? It's not like we are dealing with conditions that you want to catch early so you can treat them. If you really did have something big and nasty (which you don't) I would guess you would be having pretty major obvious significant problems by the time you had reached the twitching stage. And then at that point what did having an EMG buy you? Nothing. It pretty much just told you what you and your doctor already knew. Oh and now you are also out a couple hundred dollars.As for me, I have had BFS for 3+ years and I have never had an EMG. Never wanted one, never needed one. Unless your doctor tells you you need one, you don't need one either.Like Robynn said, I have seen way too many people reach absolute panic stage in the weeks leading up to their (of course completely clean) EMG. Why put yourself through that if you don't have to?
 
I had 2 clean EMG's. They helped me with my anxiety for some days, then it was back again. I cancelled an appointment for a routine follow-up in hospital in 3 months. I know it won't do anything for me unless pain. My new neuro sais there's no point in sticking a needle into someone who't just twitching and showing additional sensory stuff. A NCV can give more insight for any nerve damage due to ulnar stuff or carpal tunnel, but it's not necessary to have an EMG to look for ALS, as it just doesn't present that way.
 
Thank you all for your insight! Every one of you confirmed what I have been thinking. I don't need the EMG for peace of mind. That's just not how health anxiety works. All these tests I have done over the years just feed the beast. I will see the neuro and have the clinical but won't ask for an EMG. My spinal doctor may have already requested one, which is fine. If that's the case I'll be having the test the same day as my appointment. My main goal is to reign in this health anxiety. The fact is that once the neuro clears me, the anxiety will eventually move on to something else and the cycle will start over again. I'm ready to break the cycle and for this to be my LAST experience with health anxiety. :)
 

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