Left thenar atrophy without clinical weakness

euroland

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Hi all,

I am a 24 YO male, living in Switzerland.
My symptoms started 3 months ago. I had a severe neck pain along with left shoulder/arm perceived weakness, and thought probably it was because of a herniated disc. I got a brain/spinal cord MRI and it came back clean. This made me a bit worried, because I am a molecular biology researcher and I already knew about the physiopathology of ALS. So therefore my worrying days started. Around these days my twitches also started, mostly in my left arm. I first got an EMG of my left arm muscles 2,5 months ago, and it came back clean. However, my worries remained because the symptoms stayed with me. But I was always trying to relieve myself by the fact that there was no problem with my hands (Because I was thinking that ALS starts distally in upper extremity.). But unfortunately I was searching almost everything about the early indicators of the disease online, and eventually I came across to the split hand phenomenon. Then I looked at my hands, and got terrified. Because my left thenar was much smaller than my right one (there is almost a 3-fold difference, in terms of muscle mass, see attached pictures.). This made me sure that I have it. Around these days I also realized that I was leaning mostly on my left leg, and also noticed that there was a strength difference in my legs too, not clinically but perceived. I got my second EMG 1,5 month ago, and the same neuromuscular specialist performed the test. He actually didn't want to do the test because my clinical exam was normal (he was also not very concerned about the atrophy, although it is quite noticeable), and my first EMG was performed just one month before. But since I was in a big anxiety, he did the test on my left arm muscles , but it came back normal again (even when he inserted the needle to my thenar muscle, there was no pathologic activity.). He told me I should move on, and I wanted to do it too, but unfortunately my left thenar continued to decline, but still I have no function loss. I have body wide fasciculations too.

Now actually I don't know what to do, because even if I get another EMG and if it comes back normal, I know I will not be relaxed, because the dramatic difference in my thenars still will be there. And on the other hand, if I get an answer from EMG, I will not be happy either since positive test will be the indicator of the disease. I would be happy if someone could give me any advice given my situation. And also for the photos, do you think if it really reflects the thenar atrophy (for me it's obvious unfortunately)?
 

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Nikki J

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Pictures are useless which is why the read before posting says don’t post them. Your in person neurologist wasn’t worried. That says it all. As well as normal emg and exam.

a small anecdote. I am leg onset. At the very beginning one clinician looked at my right hand with concern and murmured ” atrophy?” I said it looked normal to me and I had no issues with it. It wasn’t a first sign of an issue there it was normal for me. I am not symmetrical and I doubt you are. I had no symptoms at all there for 4 plus years and it remains smaller than my other hand even though that is much weaker

if you don’t believe your doctor and emgs there isn’t much we can say
 

wishmobbing

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Big anxiety, you wrote it yourself. Your hands look fine to me (which will mean nothing to you as even an expert's opinion couldn't give you peace of mind.
Everything about your post screams anxiety and you will only dive deeper into it posting here and asking strangers questions that you've already been given answers to by a specialist. Please distract yourself from these thoughts and/or seek psychological counseling.

Do you still have neck pain that needs to be addressed? Do you work in a sitting position or on a computer most of the time? Does moving and stretching help?
 

Clearwater AL

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Get Real
Twenty four years old.... previous threads laid out the odds. Maybe you missed it.

I'm surprised you posted those pictures... they're nearly proof of no atrophy.
The Internet has hundreds of pictures of true ALS hand atrophy.... take a view.

"I don't know what to do, because even if I get another EMG and if it comes back normal,
I know I will not be relaxed,"

"I know I will not be relaxed."

If you're going still doubt a Highly Trained and Highly Educated Neurologist (you are not)
the most advanced EMG machine and testing results...

What more could anyone here do to help you?
 

euroland

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@Nikki J You are definitely right! Our body is not symmetrical (that's what the neurologist told me as well) but when I first saw this dramatic difference I was really shocked, and when you are in a big anxiety, it's getting harder to convince yourself. But thanks a lot for this answer!

@wishmobbing Yes you are right! I think it's the worst side of searching everything about the disease, because eventually you find some cases who got repetitive clean EMGs and after all got the diagnosis. I am trying to not to search about these anymore, but since my work is mostly on PC, I can't prevent myself. Yes I'm getting psychological support. That's the puzzling thing actually, because my neck pain and shoulder weakness disappeared after several physiotherapy sessions. But when I found this big difference between my thenars, it was enough for my mind to destroy my mental health for the next months with this fear. Thanks for the. answer!

@Clearwater AL Yes I know the muscle mass should be mostly gone to say that it's atrophy. But I was feeling like they were slowly declining, but I don't know, maybe this difference was always there. I know the chances are very low at my ages, but when you're not thinking with a clear mind, it's really hard to admit the facts. But thank you for your reply
 

affected

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I can hear your distress clearly. You need to take your fears to someone who can help you. This forum is for people with the terminal illness ALS and their carers. You have had 3 senior members clearly stated this is not how ALS presents as has your doctor. If you can't control your fears, we can't reassure you and this is not the place for that to happen.

Your doctor however can help you and I wish you the very best as you work through this.
 

lgelb

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Get some health anxiety counseling and move toward the clear mind that I am sure as a researcher is still there.
 
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