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mrpet

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Dec 8, 2015
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Learn about ALS
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Oregon
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Portland
Hi there,

My history is on here through other posts. Started twitching in late Nov 2015. Had multiple EMGs which were normal (showing fascs), although last one in August 2016 had one focal fibrillation. Brisk symmetrical reflexes. No sign of weakness. No swallowing/breathing/speech issues. I was told not ALS.

However, for the last few months however I have had this weird symptom. When I'm trying to fall asleep the right side of my lip/cheek starts to gradually pull across/down. It happens unconsciously when I'm not thinking about it as I try to fall asleep - but when I notice it happening I just consciously "relax" my facial muscles and the lip/cheek pops back to normal (so it's not like a cramp or spasticity). It then stays normal for a while until once again I start not thinking about it and try to fall asleep, whereupon it starts creeping/pulling again until I "relax" my face. And so the cycle continues.

It doesn't really happen during the day (maybe very occasionally), but mostly when I'm trying to fall asleep (it's very annoying!).

It does not persist once I fall asleep, which I know because as I come out of sleep my lip/cheek is not being pulled down/across and is totally normal.

I worry it is minor facial weakness, but then I understood weakness doesn't "come and go" like this, nor can weakness simply be stopped by "relaxing" your face or controlled by conscious thought?

Any ideas on what this might be? I've found nothing resembling it in my investigations.

Thanks!
 
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You simply do not belong here.

Please go join anxietyzone.

Truly, you can't keep coming back every few months with nothing new of significance and try to engage the terminally ill into your irrational fears yet again. Please stop.
 
You simply do not belong here.

Please go join anxietyzone.

Truly, you can't keep coming back every few months with nothing new of significance and try to engage the terminally ill into your irrational fears yet again. Please stop.

Hi affected,

I have new news. This morning I tried to walk on my heels, and couldn't walk for any length of time on my left heel. I saw my neuro today and he confirmed I had clinical weakness on my left foot.

They did an EMG/NCS. The EMG was abnormal in my TA muscle, with fibs, psw, etc. There were no other muscle abnormalities in the EMG, including other muscles innervated by L5.

They also discovered a nerve blockage in the peroneal nerve (just behind/left corner of my left knee), which innervates the TA muscle. So they confirmed they think the clinical weakness is the result of the nerve blockage and not any Anterior Horn Cell pathology.

Here is the excerpt from my visit summary:
"New left foot dorsiflexion weakness with left shin numbness. It is essential to do an EMG to determine the cause of the weakness. We will try to do the EMG today.

Addendum: The Electrophysiological showed evidence to suggest the presence of a subacute left fibular neuropathy at the knee of moderate severity. The rare, albeit widespread fasciculations are suggestive of a benign fasciculation disorder."

So now I have to deal with fasciculations, an abnormal EMG and confirmed clinical weakness - and try to convince myself it's still not ALS. This is extremely hard on me.

Thanks for listening.
 
I think you've got it backward, MP! "Not any anterior horn pathology" with another explanation for the one muscle that's abnormal on EMG = you have been cleared of ALS! What on earth would make you think you now had to "convince" yourself that you don't have it?

We're done here. Again.
 
Still the same answer - that is NOT a result of ALS but a neuropathy as it states this and says not anterior horn pathology.

You could not be more cleared of ALS. I'm truly happy for you as you now have something they can work to correct. All the best.
 
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