Old 03-01-2014, 12:36 PM #1 (permalink)
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Default Clean EMG too early?

Hi. Wondering if you can clarify something for me.

I have had a slew of medical issues (mainly headaches/neck issues) for the past 6 months. That progressed to a constant stiff neck and shoulders which would have a burning sensation at night making sleep impossible. About 2 months ago, I started twitching in the burning area, and the twitching a day later spread all over my body mainly stomach and legs, arms. I have episodes of full body crampy pains, particularly in feet and forearms. I also have a lot of myoclonus jerks while sleeping, an involuntary swallowing reflux that kicks in while I am waking up and an internal tremor (like I am shaking inside but not outside). I wake up from sleep very anxious and skakey for about an hour.

I had an EMG at about 6 weeks into the twitching. I saw three neuros. None thought I needed the EMG, but did it anyway. The EMG was 3 limbs, T8 paraspinal, eye and bulbar. It was normal and clean. No fascis or fibs noted, no denervation.

I have been reading some concerning and conflicting messages about early nerve excitability before weakness that may precede the disease.

However, I have also heard from reputable sources that if you are already twitching and that twitching is in fact ALS related, it will absolutely show something abnormal on an EMG. My dr also said that technically an EMG can be too early BUT he would see UMN signs on the clinical and has never seen a case where the EMG and clinical were both clean in a twitching person that progressed to ALS.

Can anyone set me at ease? This is taking over my life. Two weeks post EMG and Im still testing for weakness and worrying about my cramping and worrying that I have this. I have no peace of mind from the tests or doctors and Im thinking I should, right? Being "undiagnosed" scares me. They said benign fasciculation syndrome, but it just seems like a catch all, we don't know diagnosis.

I have had an EXTENSIVE workup of 3 brain mris', cervical, spinal tap, eeg, emg, full body ct scan and blood work, and NOTHING has shown.
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Old 03-01-2014, 03:38 PM #2 (permalink)
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Default Re: Clean EMG too early?

I am not a doctor, but have heard and read that you lose 70% of your nerve fibers before you will perceive weakness. So I don't see how an EMG could miss the denervation. So I'll stick with the standard--clean EMG = no ALS.
Also the primary symptom of ALS is clinical weakness.
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Old 03-01-2014, 03:42 PM #3 (permalink)
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Default Re: Clean EMG too early?

Three neuros say no?

What could they possibly know?
Oh, they know what we don't. THEY are the experts. We can't set your mind at ease if they can't.
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Old 03-01-2014, 04:00 PM #4 (permalink)
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Default Re: Clean EMG too early?

Dusty is correct, by the time you perceive the weakness 70% nerve degeneration.

This is why the EMG is a good diagnostic tool once all other tests have shown negative.

The herpes virus attacks nerves and it never leaves your body. It isn't terminal but you have a lifelong infection. Follow that path with your doctors and please remember this forum is for ALS.

Sadly we all concur with all your doctors - you have no ALS symptoms, please stop pursuing that path.
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Old 03-01-2014, 04:44 PM #5 (permalink)
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Default Re: Clean EMG too early?

Of all the doctors you're seen and all the tests you're had... one you should really see is a psychiatrist. They have some pretty neat tests too.
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Old 03-01-2014, 05:18 PM #6 (permalink)
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Default Re: Clean EMG too early?

Tillie,
I didnt mention herpes virus in my message - are you clairvoyant? You did hit upon something huge.

At the same time I started feeling burning and having twitching, I did have a month long outbreak on my lips and throat of cold sores on my lips and down my mouth..... I wonder if it could have reignited the nerves.

Thanks. You just hear so many conflicting things about EMGs and waiting times etc. I don't mean to be rudely persistent when so many are suffering with this disease.

Thanks for your time and responses.

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Old 03-02-2014, 03:34 AM #7 (permalink)
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Default Re: Clean EMG too early?

You got a Clean EMG. Just leave, and stop mess with people here.

You should go to a llmd. Check your Cortisole levels, Babesia, Lyme, Ehrlichia and deff HERPES viruses. You dont have ALS. Do i need a hammer to tell you? Your Anxiety will just ruin your life, and make your virus(if you have one) grow stronger...
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Old 03-02-2014, 09:28 AM #8 (permalink)
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Default Re: Clean EMG too early?

Christopher, you need to lighten the f$$$$ up.

Get YOUR issues taken care of and when you get your head on stright, take a course in civility.
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Old 03-02-2014, 10:58 AM #9 (permalink)
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Default Re: Clean EMG too early?

Quote:
Originally Posted by Pyrs View Post
I have no peace of mind from the tests or doctors and Im thinking I should, right? Being "undiagnosed" scares me.
That's funny.................being "diagnosed" scares me. Go CELEBRATE man it sounds like you have seen some very good doctors who have given you every test imaginable and they say no ALS. If it would make you feel better I'd give you mine.....I don't want it anymore.
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Old 03-02-2014, 11:45 AM #10 (permalink)
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Default Re: Clean EMG too early?

I have been told by my neuro, that denervation potentials will be picked up on the EMG in good time, even before clinical weakness is noticed by the patient, the EMG cannot in that sense be taken too early.

UMN issues will not show on an EMG, but as PALS have explained several times, ALS has both UMN and LMN.

Christopher, I am not sure if you are trying to make a point because you yourself have anxiety issues and your symptoms could be lyme/virus, and people have told you to take care of your anxiety. If you wish to troll or make a point, imho, go somewhere else to do that.
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Old 03-02-2014, 01:50 PM #11 (permalink)
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Default Re: Clean EMG too early?

Thanks for replying and not beating me up. And don't beat Chris up, hes probably just scared.

I hung up on if they "missed" my spasticity, being my UMN "sign". I have really tight back and neck muscles and they only did the limb spasticity tests. Its me googling too much which I have to stop. And I guess I don't really know what spasticity is. If I can still touch my toes bending over and turn my neck, I guess I don't have true back or neck spasticity?

Im sorry, thats it. I won't ask anymore questions.
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Old 03-02-2014, 03:38 PM #12 (permalink)
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Default Re: Clean EMG too early

Its not that. I know how anxiety can make this neurological diseases go so much faster. When people tell me that i am stupid, and should treat my anxiety i get calm for one night. I just want every anxiety person inside here to calm down.... And the only way to tell a person that is having big issius with anxiety is not to tell "see a doc". Because we allready know that we need a doc. It will just raise the anxiety 100 times.
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Old 03-02-2014, 03:39 PM #13 (permalink)
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Default Re: Clean EMG too early?

could somone give me a list of viruses that can cause nerve damage, leg weakness and fasculations...maybe this just all my problem is...i am now walking with a walker since first weakness in right leg in 2011..right foot drag and ankle weakness 2012..i just went for evoke potentials they are testing me for everything...my lyme disease was negative
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Old 03-02-2014, 03:46 PM #14 (permalink)
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Default Re: Clean EMG too early?

Dont take me wrong, please. I am myself in your position. I will be diagnosed with a hard disease. I got twitches in palms, constant in calves, in tounge. I have anxiety but that is not wierd. Look back, when you had the first symptoms.... My gf is crying in the other room, with our little baby. She understands... Because she see me get weaker and weaker. When anyone tell me how stupid i am... I will have on night with them, without anxiety. Please tell me how stupid i am... And i am full of anxiety...
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Old 03-02-2014, 03:54 PM #15 (permalink)
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Default Re: Clean EMG too early?

I believe the original poster's question has been answered, I hope to his/her satisfaction. I am closing the thread.
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