VERY confused after Neuro Visit

[georgiabelle]

Hi everyone! Was wondering if I could get some advice on my recent neuro appointment. In November of 2016 I had heavy twitching in both my shoulder blades that basically went off non-stop for about 3-4 days and then stopped. It was around that time that I noticed my left shoulder blade muscles had atrophied. I am also began experiencing severe pain from the shoulder not being in the correct position anymore. My GP noticed the atrophy when I went to their office and scheduled an appointment with Emory for an exam and EMG/NCS. The NCS was normal and so was the EMG. During the EMG they tested multiple regions of my body as well as several of the muscles on the left side of my back, including the one that was atrophied. I asked to doctor performing the EMG if this could be ALS and she said to take ALS off the table. Can I assume that I am OK even if I have very apparent atrophy in my back since the EMG was normal? Could the muscles they tested in my back have already been so atrophied that they wouldn't show innervation/deinnervation?

Just very confused how she could say ALS is not an option when she agreed I had some slight atrophy? I have read on these forums that some people had good EMGs at the start and then the EMG changed. Any advice would be greatly appreciated!

 

[Atsugi]

Lots of reasons for atrophy. Not just ALS. Did the doctors seem concerned about that "slight atrophy"?

If Emory examined you, ran the EMG, and cleared you of ALS, that's pretty much all you need to hear about ALS. Take it off the table.

"I have read on these forums that some people had good EMGs at the start and then the EMG changed." Yeah, people say that sometimes. Forget it. Focus on what you know for a fact--you're clear to live your life ALS-free. If your"very apparent atrophy" on your back is concerning, follow up with your family GP medical doctor to find out what it might be.

 

[georgiabelle]

Hi Mike--so the neuro noticed that I definitely had atrophy and my scapula is slightly winged, BUT when she EMG'ed the trapezius, rhomboid and scapula muscles she didn't see anything abnormal on the EMG. Would that mean for sure that the atrophy wasn't caused by ALS? Or could the muscle be too atrophied to show the innervation/deinnervation?

 

[Atsugi]

The kind of atrophy that is caused by ALS is quite different than what you have described.

Here's a little about how ALS leads to atrophy.

First, the ALS destroys a few nerves in your brain. These nerves normally would send the "go" signal down to the muscles and cause the muscles to move. After you have had ALS for some time, those muscles have not moved in months. We say the muscles are paralyzed. Eventually, because the nerves have not sent any signals to the muscle, then that muscle, limp and unused, loses its tone, loses its roundness, and lies flat, appearing very skinny. We call that atrophy.

Notice that paralysis comes first. After some weeks or months, the paralyzed muscle appears atrophied.

Some other diseases attack the muscles directly, eating them up. That is not ALS.

 

[georgiabelle]

That makes sense. I had heavy twitching in those muscles a few days before they looked atrophied though...wouldn't that point to ALS?

 

[Atsugi]

Not at all. Twitching is common to so many conditions that they are not diagnostic of anything. I think most twitching is due to temporary stresses.

AT THE TOP of this subforum, you'll see a thread stuck to the top with a pin. It says READ BEFORE POSTING... It has all the answers.

I don't know why your shoulder got skinny, but I see no reason whatsoever to be concerned about a terminal disease.

 

[lgelb]

GB, yes, ALS seems off the table, but how did Emory leave it with you in terms of a diagnosis?

 

[georgiabelle]

They just said the would check my CPK levels. That's why I am so confused. They did not give me any definitive answers. I read an old post from Wright that said that the muscles that cause a winged scapula are very hard to EMG correctly. Could it be that maybe the EMG reading was wrong ?

 

[starente15]

You have nothing that describes ALS. If you are confused and believe things haven't been explained enough, you should reach out to your doctor for more information.

 

[georgiabelle]

I am just confused. If I had significant atrophy in a muscle in my back and they did an EMG on that muscle, if they saw no active denervation would that mean it wasn't ALS? Do the weak muscles get to a point where the EMG wouldn't be reliable because they are too weak to show activity?

 

[lgelb]

No, however weak the muscles are, the abnormalities in ALS in how the nerves control the muscle can be seen on EMG -- including however much they are not doing the job.