EMG sound at muscle rest - please advise

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peet

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Hello,

I have been a lurker here (and at aboutbfs.com) for good few months. I have been trying to convince myself about BFS and did not want to write panic posts after every new twitch hotspot - which I have many by now - until I attended my first EMG test today.

The test was scheduled to rule out MND and confirm suspected BFS. However - the test did not go very well. The doctor said she could not rule ALS out because, she says, most likely, my muscles are not relaxed enough. She tested needle in lower leg and 3 or 4 places above my knee - in all cases, without any contraction, there was this quite regular tap tap tap clicking or popping sound. She left the needle in for minutes and I felt relaxed (apart from being sweaty stressed) but nevertheless the machine kept on popping in this rhythmic sound (~2 per sec)....

At the end she said I need to come back and see some other doctor for second opinion. I was already anxious to hear that but whenI googled stuff back home (including alsforum) I discovered it IS THE ACTIVITY AT REST which counts and should not occur in healthy muscle.

I do not know if it is indicator of ALS but it sounds like it and the fact she wants me to come back and have the same test with another doctor is very odd and makes me think she SAW what I am afraid of but does not want to say until confirmed by somebody else.

Now - more that ever - I am really scared and would welcome feedback on how much is the sound of EMG during muscle rest indicating I am in deep trouble.

Kind Regards,
Petr
 
How quickly can an adult turn into a crying hopeless mess. I know this does not add anything to the topic but I can't help myself.
 
As far as I can remember the EMG is somewhat noisy even when "relaxed" Certainly it is not easy to be relaxed under the circumstances. It sounds to me more like she thinks everything is ok and wants a second opinion to confirm it. When is your follow up?
Do you have clinical weakness? If not then the chances are even greater all is good
 
The peculiar thing about it is that it did sound more or less regular and the intensity was even, it did not fade out and then come back. It was like regular click/pop sound with constant pattern.

I do not have diagnosed clinical weakness of particular muscles however I am gradually loosing my strength to the point of shaking muscles when going down the stairs, holding my hands above shoulders. Whenever I flex my muscles they go into shaking - in seconds. I am not able to hold weight I was able to hold before. My strength test ranks my muscles anywhere between 3 and 4 on 1 to 5 scale, more or less even on both sides.

I go back on Thursday where we can discuss things but my doctor is very dismissive and strict. I was told I may have another appointment in two weeks time since next week I go on holidays (not quite in the mood anymore).

What is perplexing that I know for sure I can't make my muscles relax more - which is what I told her as well. I just laid there for minutes doing nothing, the needle not even being painful so can't imagine I can improve on the condition. I have to admit that my muscles felt like week or trembly because of all the tests.

I am pessimist by nature, analyst by profession and it all ads up. I feel if it was OK she would release me.

You see - I read everywhere - if EMG is silent at rest it's a good sign.

Thanks for you response, I appreciate ANY opinion,

Kindest Regards,
Petr
 
I know as someone who doesn't actually have ALS i shouldn't be posting, but I wanted to chime in since I had noises at rest and did not end up with it. I was nervous for all three of my EMGs and there was noise at rest and when I moved the muscle. From what I gather, the EMG tech or doctor can still pick up any eye-opening abnormalities if there are any. I even got numbers on mine, but there are so many other things it can be. I ended up with a condition called idiopathic brachial neuritis, which is an even slimmer incidence than ALS, so it goes to show that not everything means the worst. The best thing to do, and I know it isn't easy, but you can't overanalyze every little thing, otherwise you will go crazy. Take it from a guy who spent a week in a psychiatric hospital because of ALS worry. Go through the proper steps, but as most will tell you on here, there is no reason for you to jump to the absolute worst conclusion right off the bat.
 
thanks hunterross258,

I actually hope for feedback of people with similar behaviour who have NOT been diagnosed with ALS as it would indicate there is reason for hope. I see only ALS diagnosed are allowed to post - which I was not aware before.

I hope your condition gives you reasonably good outlook and that you can live around it.

thanks for your post,
Petr
 
I will clarify my comment to add that I referred to emg sounds on normal muscles and to emgs done before symptom onset ( I was having them for research purposes as a gene positive FALS family member)
 
Thanks Nikki for making that clear...

Believe it or not - my mother hearing the news and anticipating me going through meltdown decided to stop by the hospital (without me knowing), found out the doctor and had a talk with her - unbelievable. Surprisingly the doctor was willing to share her opinion.

Apparently she said that 1) she believed the noise was due to tension and that she thinks I was unable to relax (but still I don't think I could possible relax more) and 2) due to the noise she was not able to interpret what she was seeing. At the same time, apparently in believable and honest way, she confessed to my mother that she did not have much experience and as I was coming with referral to rule MND out (which she was unable to do) she felt I needed to be seen by somebody more experienced.

I still find this hard to believe, that a stress and some tension would make this test this impossible. I could not withhold this part of the story from you as it adds certain amount of absurdity to a point where it's almost - well funny is not the word but I suppose you know what I mean.

If the above was true I find it equally hard to believe that once you get appointment for such a rare disease you get seen by staff who does not have enough experience to diagnose it.

Sorry for shortage of words, I am not a native speaker,
Petr
 
Hello,

tomorrow I will be seeing the doctor who did the last EMG (as described above). Do you have any idea what questions I should ask her so when answering these she might possibly reveal some information possibly indicating real state of things?

regards,
Petr
 
You must ask her everything you would ask us! Then come back and tell us what she said. Good luck.
 
I would ask her why she was repeating the emg, what did the first show(so you can understand her), if she doesnt understand what she is seeing on the emg could another doctor with mnd experience review it.....

then I would ask what is she trying to rule out.......have you had bloodwork? What did it show, what has been ruled out, what are her differential diagnoses....take your mom or someone else with you so you have another set of ears. And lastly, write down all your questions and ask each one.
 
Since she acknowledges she is not a specialist, if the findings continue concerning, you might ask for a referral to an MND center.
 
I was told basically the same as before - that I had activity due to tension in which case she was unable to interpret what she was seeing however that she believes there isn't anything and that probability of ALS is minimal. She did quick clinical check and did not identify weakness or hyper-reactive reflexes (although I feel she was not too thorough). She says it could be BFS, but then again, if next EMG is OK.

I asked what I thought was a good question and got interesting answer, maybe of some significance. I asked whether she could not diagnose anything in all muscles and she said, oh - no, the calf muscles were fine, just the quadriceps was problematic.

Now I am not sure if that means anything - she clearly can distinguish difference in muscles and clearly knows something is ok or not ok. On the other hand - I would have thought - if she knew it looked like ALS she would not stop there but would check the other thigh and other muscles as well. She moved the needle to 3 different places, and wiggled in each and then ended the test saying there is activity due to tension and that she can't make any diagnosis.

Now I have to wait to 10.3. to have the same test with another doctor, she says, somebody with 10 more years of experience.

Thank you all for patience and your advices, I will report back and welcome your thoughts in the meantime.

Petr
 
It seems as if she has been very honest and forthcoming. I agree if she had suspicion she would have looked at other muscles adjacent to the one she has said was not relaxed. It is unfortunate you have to wait a month to confirm everything is fine but you have been clearly told it is a technical problem and not an abnormal finding in your body. It seems as if your mind is playing tricks on you and not letting you accept this. It is additional good news that your calf muscles were fine. While it is not an absolute, ALS tends to start distally in limb onset ( in a hand, foot, ankle, lower leg). Do you have symptoms in your calves? If you do and they were normal why would you expect other areas to be abnormal?

Please do not waste a month of your life worrying about this. Don't read her and elsewhere about ALS. Find something fun and exciting to occupy your mind. Good luck
 
Hello Nikki,

my mind might play tricks with me as this is odd situation and you are correct in saying I find difficult to accept what I am being told. Also because she actually seems to be pretty involved around ALS patients, she specialises in neuro-muscular disorders and seems to be in position of a capacity in her area. Age-wise she must have at lease some 10 years of experience with this.

So I feel I am just tried to be calmed down before second opinion comes.

You say she would have looked to adjacent muscles, I know she changes needle position 3 times in quadricep however I was surprised to find only one puncture in my thigh. Does adjacent mean close by or different muscle? Would it be expected of her to perform needle EMG also on arms and other areas, by default, especially when ALS was suspected?

I have fasciculations in calf muscles, sort of everywhere, and new focal twitching in my right thigh which she saw and confirmed.
I also have atrophy or right thenar and reported fasciluation in my left(!) thenar but she did not test these, she stopped at the thigh and did not even try the left one.

I will stop asking questions as I know I have to wait and the last thing I want to do is to steal time from you when there is no way of knowing the truth and I simply have to wait one more month. It will be a tough one.

Thanks,
Petr
 
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