Neuro observed tongue fasciculations, atrophy, abnormal EMG

[Lefty1234]

Hello, I had posted here around this time last year (old threads here and here). I had tongue and hand twitching, and perceived difficultly projecting my voice. I had an EMG with a local neurologist (upper body only, no legs or bulbar) who said it all looked good (didn’t even look at my tongue though!), except I had fibrillations in my thoracic paraspinals. He said he was 90% sure not ALS, and told me due to anxiety and to relax.

Fast forward through the summer, and it was mostly off my mind. This past fall (November) I started having some perceived difficulty articulating words. Along with a constant burning tongue. Also muscle twitches around the body (which I mostly ignored) with the right calf being persistent every day/night. The calf is kind of every 20 seconds or so, one twitch in a different part of the lower leg muscles. I felt speech has gotten worse over those 4 months, so I scheduled an appointment with a different neurologist. He looked in my mouth, and said “those are tongue fasciculations, sure enough”. He seemed surprised. This was with tongue at rest. He also noted “tremulous activity” when I moved my tongue side to side slowly or stuck it out. He did an EMG the next week, which showed a few different abnormalities in 3 muscles in the lower right leg, along with what he called “a brief run of sharp waves” in the paraspinals. Tongue EMG was normal. He ordered a bunch of bloodwork (all normal, except Vit D a bit low) and MRI. MRI was all normal, except left side of my tongue was slightly smaller. My neurologist looked and noted it himself at our follow-up appointment. He said he still thinks it’s not ALS, but he’s not sure, and gave me a referral to Emory ALS clinic. I just thought I’d post my EMG results on here, and see if anyone has thoughts. Appreciate you all, thank you!

 

[ShiftKicker]

Hello-
Sorry you find yourself still without answers.
Were you provided anything in the way of a summary/conclusion for your most recent electrodiagnostic testing?

 

[lgelb]

I'm not seeing ALS in this myself, especially given normal tongue EMG findings, but you're going to a good place.

 

[Lefty1234]

Thank you both. Yes here’s the write up from the EMG:

“Nerve conduction studies showed mild slowing of right ulnar conduction across the elbow C/W compression. The right peroneal CMP is mildly reduced. The left medial plantar sensory potential is reduced in amplitude. Otherwise normal EMG shows a single run of positive waves in the right tibialis anterior, EDB, and medial gastroc. A brief run of positive waves was also noted in the right middle thoracic paraspinal muscles. The genioglossas was normal. No fasciculations were seen in any muscle. The findings are suggestive of a mild nonspecific axonal poly neuropathy and mild right ulnar compression at the elbow”

And then after the MRI results and bloodwork and follow up, he stated this:

“I can’t exclude a very mild indolent presentation of ALS or possibly Kennedy disease. He would like to obtain an opinion at Emory, so I will arrange that for him.”

I have read that the bulbar muscles are hard to get an accurate EMG on. Is it still concerning that he saw the tongue fasciculations, combined with paraspinal positive waves, and positive waves/CRDs/mild increased amplitude/mild decrease recruitment in the right foot/right calf that’s had the consistent twitching? The Dr seemed conflicted by that combination of presenting issues, but not having any weakness, atrophy, or noticeable slurring after a year.

Thank you!!!

 

[lgelb]

The last sentence you wrote is key.
We're not crystal balls here, but the odds against ALS are still in your favor.

 

[TLARRI1]

My wife started having issues in July of 2023, with her right hand being weak. It actually took a little over a year for the Doctors to actually diagnose her with ALS. The last test that she had that helped determine the decision was the EMG.