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Volunteer22

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Hello everyone,

I posted back in October about some worrisome symptoms that I was having. The main symptom being a feeling of being off balance while standing. That has gotten worse. Since then, some things have changed. My calves have constant fasciculations. They never stop. I was very strong back in July, to the point of doing 320 lbs for 20 reps on calf raises. I am still able to do 225, but only for 5 reps. My squat has gone from 225 x 10 to 225 x 3. My calves also cramp frequently if I need a strong contraction. The fasciculations aren't limited to just my calves. In fact, they are all over my body. My left shoulder, left 1st dorsal interossei, left hypothenar eminence, and right 1st dorsal interossei have atrophied. However, according to the neuro, "You still have a robust muscle there, so suspicion is currently low. Your left hypothenar eminence could have always looked that way and you're just noticing." My left shoulder also hurts frequently.

I have since had two EMGs and NCVs. I have the results of the first and am going to attach it to this post. I will get the results of the second one as quickly as I can. The conclusions from the EMG I have posted are as follows:

NCS findings most consistent with a mild demyelinating peripheral neuropathy affecting the legs. EMG findings most consistent with benign fasciculations. Very mild cubital tunnel across the elbow.

I'm still worried about ALS as a possible diagnosis, because how often is a 29 y/o going to have peripheral neuropathy in his legs, and an unrelated neuropathy in the elbow? I also can't get over the feeling of weakness in my legs and arms. It's not clinical weakness, but it doesn't feel as strong to me.

Has anyone else had a presentation like this? Thank you all for taking the time to help those like me.
 

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KarenNWendyn

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You ask “how often is a 29 y/o going to have peripheral neuropathy in his legs, and an unrelated neuropathy in the elbow?”

Way more often than he or she would get ALS.

Your EMG does not have the sort of abnormalities we see in ALS.

You mention “feeling weak” in your arms and legs. ALS is about failing, not feeling. Failing might include inability to stand on your toes or heals, inability to climb up a stair, inability to form a pinch strong enough to grasp a button or pull a tab. You have not described failure and apparently don’t have documented clinical weakness on your neuro exam.

I can no longer do any of the above actions and I don’t feel any weaker than I’ve ever felt.

So I am not seeing ALS in your post.
 

Volunteer22

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Thank you. I guess I'm worried about my right EDB on the test and the few polyphasic potentials in other muscles. I do know there were more muscles with fasciculation potentials detected on this most recent EMG, but that doesn't necessarily mean ALS.
 
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Volunteer22

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I'm sorry, one more real quick questions about fasciculations. Are they usually focal in ALS or widespread?
 

KarenNWendyn

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Your presentation does not suggest ALS, so the fasciculations don’t mean squat since they aren’t accompanied by muscle function failure.

But to answer your question — in ALS, fasciculations usually start out in the region that is weak and failing and then spread in time to involve other regions as they weaken.
 

Volunteer22

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Here's the second EMG that I just recently had. The neuro told me this one was better than the first, but on obtaining both and comparing them....I don't know how she said that. I have more fasciculations in more muscles, more polyphasics, some recruitment, duration, and amplitude abnormalities. I'm just very concerned. I'm stressing out over this and I just want to put it behind me. Does anyone have any light to shed on the situation? Karen, your advice thus far has been invaluable.
 

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ShiftKicker

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While this forum is a great resource, is there a specific reason why you are not consulting your neuro about this? Do you not trust them and prefer the reassurance of strangers on the internet- and ones who do not have your entire medical history nor able to provide an in person exam to support findings as well?
 

KarenNWendyn

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I wish my EMG looked as good as yours.

Yes, please trust your doctors. There’s not much more we can say.
 

Volunteer22

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Shiftkicker, I trust the neuro I saw for the EMG. The neuro I have had an appointment with moved my appointment two months away due to unforeseen circumstances on their part. I need to do a better job of handling the situation. It's just tough with symptoms and no explanation for them. I know my anxiety over the issue is making it worse, and I need to figure out how to turn it off. I really appreciate you all taking the time to answer questions from people like me who are letting anxiety get the better of them. The difficulty lies in the unknown. Again, I can't thank you guys enough. You have amazing patience to deal with those like me.
 
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