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Becca15

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Hi everyone.

I'm concerned about my ongoing symptoms.
my fasciculations happened a couple of months ago and progressively fire off in all parts of my body, especially my tongue and abdomen. They are very visible when my tongue is in my mouth at rest.
Ive woken up in the middle of the night on many occasions unable to move or lift my left arm properly for a couple of minutes. When I try to move it, my forearm goes in all sorts of directions (apart from the way I want it to) then it seems to subside (is this spasticity?) my fingers cannot be bent on the left hand too, it's happening more often and came on the same time as the twitches. it does go away for a while but then comes back often at night. I'm also waking up on a morning where i experience pain my ribcage when I breathe. I currently have no weakness apart from not been able to move my arm and fingers on occasion in the left side.
I've been referred to neurophysiologist but could this be ALS especially with the widespread fasciculations and potential spasticity?
 

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Hi Becca,
No that is not spasticity I'm happy to say. Twitching means nothing which I'm sure you read in the pinned post to read before posting.
The neurophysiologist will be a good person to ask all these questions of as they examine you. All the best, there is nothing alarming in what you report.
 

lgelb

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You might ask about a sleep study, where any breathing and movement issues connected to sleep can be discerned. There are some sleep disorders that can cause the brief sort of paralysis that you describe. Of course, it is not necessarily anything even that serious.

While you await your appointment, you can video your sleep with your phone or laptop.

Best,
Laurie
 

Becca15

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Thank you so much Laurie. I'm seeing neurophysio tomorrow x I'll take on board what you've said. God bless
 

Becca15

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Hello.
Ive been to see the neurophysio today who seemed concerned about me not been able to lift my arm on a night. He did EMG in tongue, leg and arm. My tongue and leg went twitchy when needles were in. He said results will take a week. I was under the impression that they could give results on the day. Just wondering if EMG results are usually given on the day. Tbh I don't mind them taking longer as long as they are analysed properly.
 

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Do not read anything into not getting results. It is a protocol thing. People have received results- normal, abnormal in some fairly benign way or flat out told it was ALS- while in the EMg room. Others do not get any indication at all and have to get their results from the referring physician. It depends on the doctors and the institution.

twitching during the emg means nothing
 

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remember that twitching means nothing, either at rest, when using the muscle or during an EMG
 

Becca15

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Hello everyone,

These are my EMG results. Still waking up unable to move my left upper shoulder even though it subsides when I am
Up and about. Still getting twitching. Waiting on MRI results. Can EMG pick up on early ALS and can it be mistaken for carpal tunnel? Also My twitches are not constant so could it have missed the twitches I do get. I cannot understand why my upper arm and shoulder are affected if it's just carpal Tunnel. I'm paralysed with my upper arm and shoulder at night.
 

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Nikki J

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Hi
your emg was perfectly normal. The abnormalities that said cts were in your ncs which has nothing to do with ALS so no those abnormalities were not misinterpreted ALS.
I don’t know what is wrong with your arm and it isn’t all cts I agree but the emg is not ALS and the description and timing of your symptoms don’t sound like ALS either.

the mri may give an answer. Has anyone examining you clinically found any abnormalities?
 

Becca15

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Yes they've found weakness of my left side and tremor like twitching in my ring and pinky finger. It's strange as my Ulnar nerve study was normal yet they have been identified and are very apparent. I thought it was Ulnar nerve that supplies these two fingers. They've seen the fasiculations in my tongue too even though it wasn't picked up on EMG at the time. The fasc are in left side of tongue, they tested the right side.
 

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Great news of no ALS! Not via your symptoms, not via your EMG, and not via your clinical exam. Remember, ALS symptoms do not come and go nor do they start out in your tongue, arm, hand fingers, and diaphragm all at once. Keep working with your doc. It could be nothing more than sleeping on your side funny. The good news is, there's no reason for you to be on a site for those living with ALS

Good luck to you on your diagnostic journey and take good care.
 

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As you will have read, tongue fascics are almost always benign and if they were a sign of ALS, whether appreciated on the EMG or not, there would have been abnormalities in other areas on the EMG. Testing the right vs. left side of the tongue makes no difference at all to those facts. There is no way that pathological fascics would be on one side and not the other. And again, you did not have any EMG abnormalities at all, let alone in your tongue.

Agree with Bestfriends that you'll want to look at your pillow, mattress, and seated support.

Best,
Laurie
 

Becca15

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Does it cause muccle dent like this on my back, it's appeared over weeks
 

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Becca15

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It looks and Feels like atrophy. May explain why I can't move shoulder properly on a night
 

lgelb

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If it were atrophy caused by dead nerves, the EMG would have shown that. Your judgement of what "looks and feels like atrophy" is not a medical one and is not supported by any of the facts you have presented. Again, I would recheck all the ways you are positioned during the night and day, and return to your GP for any followup, e.g. a trial of physio.
 
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