Old 09-12-2017, 09:32 AM #1 (permalink)
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Default Denervation and reinnervation after 11 years

Hello all,

I started twitching almost 11 years ago, in November 2006. Since then, I've had problems with exercise intolerance and exertional weakness-- my muscles will shake or become weak after carrying items or shoveling snow, but I can still walk, talk, button my shirts and live my day to day life.

I recently had an EMG and muscle biopsy. The EMG showed a lot of fasiculations, but no other problems. The muscle biopsy showed denervation and reinnervation. Has anyone here seen anything similar or have any thoughts on what could cause this? The timeline of my symptoms doesn't seem to be ALS, but the fasiculations and now denervation and reinnervation have me very concerned.

Thank you.
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Old 09-12-2017, 09:55 AM #2 (permalink)
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Default Re: Denervation and reinnervation after 11 years

What does your doctor say?
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Old 09-12-2017, 10:16 AM #3 (permalink)
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Default Re: Denervation and reinnervation after 11 years

Hi Andy,

All I can say is wow! You've been on this site for 8 years with 258 posts all in. That's a lot of time spent on a site for a disease in which you've been cleared of a number of times.

With this last appointment, what did your doctor say? I would be hard pressed to think anything ALS related, as after 11 years, you can still walk, talk, and do all activities of daily living.

With my husband's diagnosis, it said right in the EMG summary that ALS was the diagnosis. There was no guessing and waffling about by the 3 neuro muscular specialists that all thought he had it. They told him outright, "You have ALS. I'm very sorry."

The last EMG even detected that it had spread into his right leg and forearm. He has had no symptoms in those limbs so far; that's how accurate an EMG is for detecting ALS.
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Old 09-12-2017, 11:16 AM #4 (permalink)
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Default Re: Denervation and reinnervation after 11 years

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What does your doctor say?

Nothing yet. I received a call last night from an intern who read me my test results. It was an intern from the office of the surgeon who performed the test, not the neurologist. I called the neuro I saw and am waiting to hear back.
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Old 09-12-2017, 11:21 AM #5 (permalink)
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Default Re: Denervation and reinnervation after 11 years

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Hi Andy,

All I can say is wow! You've been on this site for 8 years with 258 posts all in. That's a lot of time spent on a site for a disease in which you've been cleared of a number of times.

With this last appointment, what did your doctor say? I would be hard pressed to think anything ALS related, as after 11 years, you can still walk, talk, and do all activities of daily living.

With my husband's diagnosis, it said right in the EMG summary that ALS was the diagnosis. There was no guessing and waffling about by the 3 neuro muscular specialists that all thought he had it. They told him outright, "You have ALS. I'm very sorry."

The last EMG even detected that it had spread into his right leg and forearm. He has had no symptoms in those limbs so far; that's how accurate an EMG is for detecting ALS.
My post count is mostly because I used to spend some time in this part of the forum to help answer questions from people who just had twitching, but I haven't done that in years.

I'm sorry to hear about your husband. My EMG only showed fasiculations, so I'm surprised that denervation and reinervation showed up on the muscle biopsy. But they EMG'd my left side and took the biopsy from my right leg. I don't know if there's any clinical significance of how denervation shows up.

I'm asking in this section of the forum if anyone else had similar test results that didn't end up having motor neuron disease.
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Old 09-12-2017, 11:25 AM #6 (permalink)
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Default Re: Denervation and reinnervation after 11 years

Please let us know what your neuro says. Is it a neuromuscular specialist ? As you know we have the best in Boston!
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Old 09-12-2017, 11:53 AM #7 (permalink)
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Default Re: Denervation and reinnervation after 11 years

Yes, best to get it straight from the horse's mouth, as they say. Getting awful news over the phone typically isn't done, so I'm hoping for you that the results do not mean much.

Good luck and post on what your neuro thinks.
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Old 09-12-2017, 12:00 PM #8 (permalink)
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Default Re: Denervation and reinnervation after 11 years

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Please let us know what your neuro says. Is it a neuromuscular specialist ? As you know we have the best in Boston!
Who do you see? I actually made a trip to the Mayo Clinic in Minnesota because I haven't had much luck in Boston.
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Old 09-12-2017, 12:13 PM #9 (permalink)
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Default Re: Denervation and reinnervation after 11 years

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Yes, best to get it straight from the horse's mouth, as they say. Getting awful news over the phone typically isn't done, so I'm hoping for you that the results do not mean much.

Good luck and post on what your neuro thinks.
Thanks. I just found out the neuro I saw won't be back in the office until next week. The intern I spoke with called me about taking care of my muscle biopsy, post surgery side effects. They mentioned the test results they saw on my notes, but I don't think that person even realized how disconcerting those results were.
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Old 09-12-2017, 12:19 PM #10 (permalink)
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Default Re: Denervation and reinnervation after 11 years

I go to MGH ALS clinic.
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