EMG accuracy re: placement?

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MaureenNJ

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Hello and thank you in advance for any feedback. (ETA - 52 year old female)

I have spinal stenosis and began having issues with my feet in November. In December I had an EMG/NCV with a pain management doctor who diagnosed peripheral neuropathy in both feet and legs, mononeuropathy, and radiculopathy. I thought that was that. Until my primary care physician said that doctor only tested feet and legs and there could be more going on, see a neurologist.

He mentioned 'more going on' because of the spasms I've been having. Started with some JOLTING a few months back when in bed trying to relax. Wide awake, but I'd jerk. I also have what I can only describe as tightness in my neck. And plenty of other odd sensory things.

These spasms have now progressed to happening numerous times. Waking me at 3am. This morning it happened again, along with my right foot and right thumb jumping all over. They happen when I'm sitting as well, just out of nowhere. And terrible internal tremors upon waking.

Primary gave me 25 mg of Zoloft, which caused my hands to shake. At least that's what I put it down to. I discontinued yesterday after going to 12.5mg, but terrible trembling continues.

I ALSO had a neck xray which revealed more disc disease. Insurance requires PT for a number of weeks before approving an MRI.

I've heard and read a great deal, including people who were told their symptoms were down to stenosis, or carpal tunnel, when it was ultimately ALS. Until my primary terrified me I had not thought of it. NOW I have anxiety - non-stop. Until these symptoms and so many doctors I didn't panic like this.

Neuro is not for another 3 months. I am on a waiting list with another and hoping a cancellation comes up sooner, though I am consumed with fear now.

Is it true that the emg/ncv must be taken in very specific places to diagnose an MND? That if upper it would never show on lower limbs, or even if lower limbs the placement is specific??

Sorry, one other edit. The phys. therapist noted 'mild clonus reflex response' in my right foot, which also sent me down the rabbit hole. He said 'could be a neck disc.' But again, haven't had the MRI yet.
 

Nikki J

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Jolting and sensory issues do not suggest ALS. So your question is not really relevant

it is true that if you have ALS only in your arm a leg emg might not see it but if you have symptoms in several places and only one is tested that is adequate. As for specific muscles by definition the changes in ALS are widespread so it will not be missed if the area is tested.

re all those stories. Not as many as it seems but I can speak to two of them where I knew the people. Both had disc disease on mri but no sensory involvement which should have made the neurosurgeon pause and one of them had actually been told by another specialist that ALS was a possibility but they did not follow through.

mild clonus? Clonus can have a number of causes including spine issue and up to 6 beats can be a normal variant
 

MaureenNJ

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Thank you, Nikki, I so appreciate you taking the time to respond.

I am embarrassed to have posted, but I've just...spiraled. Never was gripped by such dread.

Thanks for the clarification and information.
 

lgelb

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Ask about screening for RLS/PLMD, which can wake/keep you up, and lack of refreshing sleep has its own impact, all day. If you are not usually depressed/anxious, it is worth reconsidering the Zoloft since it and other SSRIs can be difficult to come off, and have a variety of CNS effects, including fragmenting sleep.

Peripheral neuropathy in the feet can be improved with special shoes and slippers, and pressure boots or slippers during sleep.

PT can definitely help. If the first referral isn't all that, find another.

Best,
Laurie
 

MaureenNJ

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I’m sorry to be back again troubling anyone. But here I am.

The pain management doctor was able to push to get me an MRI of the neck sooner, and it revealed three bulging discs and two herniated discs, mild bilateral neuralforaminal stenosis at two levels.

next Monday he is doing an EMG of the upper limbs to make certain that my symptoms correlate with what is on the MRI.

what has made me more fearful is what has started over the last almost 2 weeks in my right arm. My upper arm will tremor internally which travels all the way down to my right hand. The shaking is very obvious. Especially if I try to lift anything. It’s a very obvious tremor. I would like to believe it is caused by whatever in my neck.

sometimes it lasts for five minutes, other times it can go on for an hour.

I know no one can diagnose me, but my mind won’t let go of this and I am terribly fearful of the EMG. Its this kind of shaking or tremor a sign of something sinister or the beginning of weakness?

And yes, of course because I constantly research I came across the story of a young man who started an ALS support group. Initially he had some cramping, and then what he said was a strange feeling in his legs, but nothing that prevented him from doing anything.

what sent him to the doctor ultimately was when he went to the gym trying to lift weights and everything made him tremble. So of course that has me terrified even more.
 

MaureenNJ

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I know I posted about symptoms and have another thread, mods might delete or merge, but I must share this. It will be LONG, a warning in advance, but this is for the terrified among us. Which is....most everyone?

Today should have been a day of celebration. After a journey of testing...my breast cancer scare was just a scare. Doctor walked in and said, "So happy to give you good news, Maureen, BENIGN!!!" I wept, make no mistake. My husband was outside the building waiting (Covid rules) and I RAN to him and hugged him, tears of joy. My relief lasted 10 minutes.

Scary as that was, I never believed I had cancer. OR at least nothing that had spread, mainly because my chest xray was clear, bloodwork good, so I thought, "well, if anything, it is local, treatable." Even when my chin went numb which set off a flurry of activity. I was not convinced I had it. Not so with MND. Why? I don't know.

It is because, in a very short time, I have become fixated that my mind tells me this is it. I'd never fixated before. Ever. And THAT makes me suspicious. 6 years ago I went through a battery of tests due to numbness and 3 months of eye twitching. That doctor discussed MS. They found lesions. I was told 'white matter' etc, due to high blood pressure, former smoker, history of migraine. He wanted another brain MRI repeated 6 months later. I never went back. He said the shape of the lesions, etc, were not consistent with MS. That was good enough for me, I wasn't getting back in that tube 6 months later, BYE!

But even with the tingling in my hand at that time, the twitching, and other oddities, I did not believe I had MS. Excruciating headaches? Never believed I had a tumor.

So WHY am I convinced of this sinister disease now? I don't know. And THAT is what convinced me, as if my subconscious is somehow trying to PREPARE me. Some part of my brain knows and is readying me. Seriously. Until recently I never dealt with panic or anxiety, the things that land people in emergency rooms.

As posted, I have disc issues and stenosis from cervical to lumbar. The fear started because my MRI's do not match the level of pain I express. Even still, there are MANY people with stenosis who don't know it. Yes, I've had and do have terrible bouts of pain, but walking and being mindful of posture helped.

Then my neck. I posted my MRI results, and my neck is a mess, too. Again, though, I have full range of motion and not 'describing the level of pain you should have given everything going on.' More fear.

What I have more than anything, on and off, is burning. I do get terrible headaches with stomach issues. BUT to read my reports and see my films you'd think I'd be flat on my back writhing in pain. I am, fortunately, not.

SO WHAT IS IT??

My fear and anxiety are symptom driven. As I posted in my other thread the newest issue is that I cannot lift with my right hand without it setting off trembling. Not pain. Trembling. I can lift my hand, my arm, but I shake visibly. Along with my other symptoms, and LACK of pain (more often than not) I have nearly broken my mind.

I have read it all. I've read of people ultimately diagnosed with MND who did present with sensory issues, who were told it was ulnar compression, a pinched nerve, slipped disc, you name it. And the panic took hold of me.

I see the pain doctor next week for an EMG. I'm petrified. The emg won't line up with the films, I'll need the neuro, I'll need a brain MRI, he's going to give me bad news, months and months of more testing... etc etc. I've been gripped by dread since January, convinced something awful is coming for me. "I know my body, something is very wrong." I believe it. It wasn't breast cancer so...

A day that should have been a celebration turned into an absolutely awful discussion with my husband about not what I WOULD do but what I WILL do when I find out the inevitable. Period. I feel it, believe it, know it. THIS IS NOT ME. Never have I been this way.

My husband is horrified. Ultimately said, 'that's your plan? And while you stand there able to walk and talk and feed yourself, that's....what is wrong with you?!!!!!' He was about 5 minutes from calling an ambulance. I was SOBBING.

And as he said some very harsh things I was struck by the fact that we were having such a conversation. I saw how this level of fear destroys people. Fixation, obsession.

I don't know what the testing will reveal. This is not a neurologist, this is a pain management doctor who offers emg's once per week. Still, he will test my arms so even if not a neuro I'm sure the emg will reveal whatever. It will certainly not be a full neuro work-up, that I know. I DO still have a neuro scheduled for April, but whether I need to keep that appointment or not, I don't know.

What I do know is that people come here asking because of fear of what we ALL as humans will face. We hope far FAR later than sooner, we hope to live to 101 and sweetly drift. But the idea of forward-facing a terminal diagnosis? We cannot, we dare not, it is pure TERROR.

And I am terrified. And I hope to return with 'the trembling is from this disc or that' something harmless, treatable. I don't know yet. But I can tell you that I have lost 7 pounds in under 2 weeks from FEAR - can't eat, can't sleep. I HAVE started speaking to a therapist. I am taking low dose BuSpar. Beyond that? Unless someone can tell me 10000% I do not have an MND and/or am immortal I am going to have to face whatever it is. Don't know how. Or when. Does anyone, really?

I'd LOVE to be told all signs point away from this. Maybe I'd sleep more than 3 hours which is what I am averaging.

My hope is that the tests line up with the films, direct correlation, no evidence of something sinister, nothing that needs further evaluation, something clear, treatable, move on. Definitive...proof? That all the testing and worry and wonder stops there with good news. In the meantime, I will agonize.

But I wanted to post all of this rambling to show you what fear can do. I should be so relieved right now. My husband bought some wine to celebrate good news. And yet I cannot because my brain has been caught in this. What a shame, a pathetic shame.

I will go for this test. I also have a TMJ specialist lined up re: jaw and neck tightness. And so on and so on.

If you truly need a doctor see one. Do the tests. If you had anxiety FIRST and then symptoms, step back and think on that.

I'm 52 years old. I hope I've got plenty of healthy and happy years ahead of me. Doesn't everyone? But I don't know, there is no guarantee. I just hope those of you suffering from this fear/phobia read this and see how damaging the mind can be. There is never enough time, ever. Whatever it is you are facing, will face, try to enjoy that you are not facing it in this very moment.

I'm a hypocrite, of course, while I sit here gripped with fear and not enjoying this 'good news day.' Try to be better than me.
 

affected

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Wow you realise you are posting this to people with a terminal disease?
Please, don't answer, go get help, it is not here.
 

lgelb

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As you say, unreasoning fear can have great power but it is treatable. I'm glad you're seeing a therapist. Sometimes it takes more than one try to find the best medication(s), too, so don't give up.

Venting here is no substitute, so I'm closing your thread to send you on your way. Please don't start another. With time and work, you can reclaim the life you say you want, and what I'm sure your husband wants for you as well. Please don't skip any steps.

Best,
Laurie
 

MaureenNJ

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Dealing with symptoms, and the EMG yesterday... total meltdown. Didn’t want to start another thread. I just wanted to say I am very sorry and I hope those of you subjected to it can forgive me.
 
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