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Old 05-12-2015, 08:37 AM #1
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Default Confusion over Active vs Chronic Denervation

Hello:

One of the long-standing members of the BFS site was recently diagnosed with ALS. He'd complained of widespread twitching and had even visited the Cleveland Clinic, where he was told to do something about his anxiety.

The person's EMG revealed fasiculations in virtually every muscle group, plus signs of "chronic" denervation in one arm, but no active denervation.

However, within just a few months, this person continued to notice increased atrophy in his arm and hand until he was no longer able to button his shirt. He visited another clinic, where they made the diagnosis.

My question: how can one's arm atrophy and weakness worsen in his muscles without ongoing, active denervation being detected on an EMG?
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Old 05-12-2015, 09:23 AM #2
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Default Re: Confusion over Active vs Chronic Denervation

That is something I would love to know. I have had widespread fasiculations since October 2014 and I have noted atrophy in my intrinsic hand muscles and my forearm flexors on my left arm/hand. On my January EMG, it picked up just chronic denervation in a few muscles, primarily in the c7-c8 distribution. I was kind of shocked there was nothing active, especially with noted atrophy.
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Old 05-26-2015, 04:39 PM #3
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Default Re: Confusion over Active vs Chronic Denervation

Hi:

I've been doing a lot of research on the Internet about this because of my own worries and what I understand is that weakness and atrophy would show up on an EMG as active denervation with something called "positive sharp waves." It would show up as early as three months following the first noticeable symptoms. I don't see how this person's neurologist could have missed it on an EMG, given your description.
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Old 05-26-2015, 07:28 PM #4
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Default Re: Confusion over Active vs Chronic Denervation

Emg 's are incredibly tricky. They are dependent on user error, how far the needles are inserted, if the right muscles are tested, what is happening with the muscle at the time.it is tested, and so on. That is why people often have more than one and why the history and clinical exam are so important. When my husband had his, we were watching the fasciculations in the muscle that was being tested but it didn't register. This happened several times. The machi e had been tested and verified for accuracy. You never know.
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Old 05-26-2015, 10:43 PM #5
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Default Re: Confusion over Active vs Chronic Denervation

You guys are talking about me. The post I made on the BFS Forum regarding the EMG I had at Cleveland Clinic was only the "interpretation" report. They refused to give me a copy of the actual EMG. Therefore, there could have actually been positive sharp waves but he didn't include it in the interpretation. The EMG I had in April when I was diagnosed did show positive sharp waves and fibrillations. I'm sure they have been a life-saver for many people and will continue to be, however my faith in Cleveland Clinic is....let's just say "diminished".

Vince
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Old 05-27-2015, 02:25 AM #6
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Default Re: Confusion over Active vs Chronic Denervation

Thanks for clarifying Vince.

I hope this thread doesn't become overrun with lurkers who have not been diagnosed jumping in. Remember to read the sticky before you think to post here if you don't have an ALS diagnosis. The sticky clearly says stick to your own thread.

If you want to discuss this, do so on the BFS forum.
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Old 05-27-2015, 08:21 PM #7
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Default Re: Confusion over Active vs Chronic Denervation

Thank you for posting Vince. It's troubling that they refused to give you a copy of the actual EMG. It's your medical record --that is your right.

What's also troubling is that I keep hearing how much the EMG is the "gold standard" for diagnosing ALS, and yet some peer-reviewed journals indicate only a 65% accuracy. Then there are many stories like yours and apparently Gooseberry's husband in which the EMG had failed to pick up ALS-related signs (like fasciculations and atrophy) even as they were watching them happen.

Vince, if I may ask, did you inevitably get diagnosed with a certain form of ALS (i.e. limb-onset vs. bulbar onset)?
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