Bad EMG but no weakness

[IowaState]

I have spent hours on this site looking at questions and answers and want to thank the experts on here providing their insights. As you may image, I am so scared about this possible diagnosis. In looking at some videos, they convinced me I didn't have it but now after reading here and seeing that active denervation and chronic reinnervation in all four extremities is almost a guarantee, I am scared again. Here are the details...

I am 48 years old and get occasional muscle cramps since about 8-10 months

My main issue on why I have been going to the doctors is that I have loss of functionality in my upper lip in that I can't pucker. I can smile and do everything else. My bottom lips on both sides occasionally tremble. The bottom lip tremble started over 2 years ago and the loss of functionality of top lip started 18 months ago and has not progressed or worsened though same days are worse than others. No issues with throat, swallowing or jaw.

The lip issue and muscle cramps were the only symptom for 2 years until I got the EMG a couple weeks ago. Right after, my whole body trembled really bad for a couple days. It has mostly subsided. I have not had balance issues but do sometimes experience vertigo. No issue with muscle weakness or atrophy at all anywhere. I lift weights, play racquetball and pickleball and do not notice any quick fatigue. MRI, CT Scans, lumbar puncture and most general bloodwork has come back with little concerns except for a tad high protein in lumbar puncture. CK levels are normal. My eyelids do twitch sometimes.

To me, I would expect these symptoms to be way worse even in slow moving als which made me feel better. It is the EMG results that have me scared. The doctor says my case is very atypical for als but she cannot rule it out.

Have attached EMG results here

 

[lgelb]

I would seek a second opinion at a<nother> academic neuromuscular center. Clearly some motor nerve fibers are not doing their job, but there is certainly room to suspect causes other than ALS.

You may have read that active/chronic denervation in all 4 extremities can exist in ALS, but I am sure you also read that not seeing a dense distribution of abnormalities in muscles outside the region of concern is more reassuring. Your abnormalities are distributed sort of scattershot across the muscles sampled, including the ones you are using normally for sports, etc., without progressive but rather fluctuating facial signs, over a pretty long period.

In addition, any CSF protein elevation suggests reconsidering the differential given what doesn't fit ALS very well, as your neuro noted. Was a Lyme screen run? ANA? Blood cultures? PTH/Ca/Mg? I would also consider toxic exposures.

What next steps has the neurologist proposed?

 

[IowaState]

Thank you for your reply, Igelb! I really appreciate your insights and perspective on this. I’m definitely planning to seek a second opinion at another center, though I can’t help but feel that the odds are slim, especially after the EMG results have already pointed in this direction.

The broader distribution of abnormalities, along with the fluctuating rather than progressive symptoms, does give me some cautious optimism. However, it’s hard not to dwell on the fact that many people seem to experience years of mild symptoms before things become truly debilitating.

A Lyme screen was done, but I’m not entirely sure about ANA or PTH/Ca/Mg. I'll need to confirm. My neurologist has suggested testing for Kennedy’s disease, though given its rarity, it seems like a long shot. She’s also exploring paraneoplastic issues related to cancer. She mentioned that if it were ALS, it would be quite atypical.

Thank you again for taking the time to respond—it truly means a lot. I am so wanting to hear words of hope.