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Nella82

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Learn about ALS
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Ont
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Toronto
Hi

Hoping to get some knowledge from experienced people on the results and symptoms I've been having for 2 months.

35 female, only started worrying about ALS when looked up fasciculations online. Bad idea.

May-June
-twitching in abductor digiti mini muscle, left. Which moves pinky side to side. Which then moved into whole body twitching, especially in feet, with occasional cramps in feet. I can see the fasciculations.
- blood tests, cpk all normal. Brain MRI normal
- neurological testing all normal, except mild jaw jerk, which Dr didn't even want to call.
-no weakness or atrophy seen

EMG July
- tested full right leg and full left arm -10 different muscles tested
- non sustained positive sharp waves in only abductor digiti minimi with mildly large motor unit potential ( long = +\- and high =+)
-report indicated as conclusion, the increased insertional activity and mildly large motor unit potential in isolation is non localizing and is of uncertain clinical significance.
-recommended to come back in 3 months as a follow up.
-could be minimal manifestation of ulnar neuropathy, but no other symptoms were dected as per neurologist and is not typical to display of such a pattern.

Ultrasound
- Dr used ultrasound to see fasciculations on feet and he said they are slow and not to worry about them...not sure what this means either.

As of today, twitching in pinky is pretty much gone but now I have weakness in the hand griping and sometimes pain when grasping. I do sometimes have tingling. There is now loss of muscle mass in left palm, I can feel bone now. I have fasciculations widespread but they jump around and don't stay in a particular spot except for the pinky, which is now almost gone. I can still lift things and use my hand, but it feels completely off and I do tend to not grip properly. The Dr couldn't explain the widespread fasciculations, except to say stress.

My understanding is that PSW are found in ALS and is acute denervation? Is this correct? What else could be the cause? Would ulnar neuropathy cause this psw?

What does large motor unit potential mean? I have asked the neurologist (mayo trained) and they just said not to worry yet and come back in 3 months.

Do I still need to worry that the pinky muscle has now died, since it's no longer twitching and could be early manifestation of ALS, since it showed PSW and large motor units?

Does my results point away from ALS and why or why not? Do I need to request further testing for a 2nd opinion?

I understand no one is a Dr here, but from what I can see online you have experienced advice and someone named Wright who seems to understand EMG quite well.

I just need to understand what results I should worry about.

Thanks.
 
Wright has not been on this forum in years.

Large MUPs are a chronic finding.

While it is true that EMG findings in ALS are acute and chronic they are also widespread. There are other things that can cause your findings that are much more likely including a pinched nerve.

Your findings are extremely localized. In ALS the usual findings show spread beyond what the patient has noticed even when the EMG is done very soon after symptom onset. Yours does not show that spread.

It sounds like your doctor is taking good care of you. 3 month followup is cautious.

Good luck
 
Thanks so much for your comments.

So is it possible to have both acute and chronic denervation in mononeuropathy? I thought that this is only seen in MND?
 
I was certainly told initially that my emg findings which were more widespread than yours could be a pinched nerve because they were still confined to one area. You should call your doctor though and ask these questions as he is the only person who can tell you what is in your differential at this point. If it were only MND he would have told you so there must be other things on the table

Please note I am a genetic carrier for c9orf72 a FALS gene. The odds of it being something else were low for me. If you are not confirmed FALS the chances of another cause are much better
 
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Just an echo of what Nikki has said -- these are very localized findings, very suggestive of a local nerve inflammation/injury and what you identify as more generalized could well be attributed to hypervigilance. What did the NCS show?
 
Thank you both for your feedback.

I appreciate you taking the time to respond and provide your views. I know this isn't easy for everyone on this site.

The Nerve study showed nothing. But what I've understood the ulnar nerve has both sensory and motor nerves and nerve studies can be normal? Especially if it's minimal neuropathy.

I am hoping it's just local nerve irritation. I have had tingling in that side of my hand and forearm. And last few nights have woken up with pins and needles in left arm.

I just got scared when I received my results and PSW and Large MUP were found. All googling said this was indicative of MND.

My Dr wasn't concerned though. So I guess I just have to wait and see if in 3 months I have any spread of these symptoms.
 
The NCS tests both sensory and motor nerves. But yes, there can be neuropathic symptoms without significant NCS findings. To test the hypothesis that the phenomenon is localized, you might seek evaluation by a hand therapist.
 
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