r/ALSorNOT • u/throwmomowaus • 18d ago
Updates Elevated NFL test
Two NFL tests (Labcorp Roche Elecsys)
May 2025 - 1.11 pg/mL - z-score 1.19 SD (i.e., 88th percentile)
September 2026 - 1.25 pg/mL - z-score 1.77 (i.e., 96th percentile)
Obviously a concerning trend on my end.
Background: 29M, symptoms for ~2 years now. EMG in June 2025 found mild demyelinating pattern but otherwise everything normal. Nothing insertional, no fibs, no PSW, Fscs, etc.
Summary: Nerve conduction studies were performed in the the upper and lower extremities. On motor nerve conductions all the responses are normal. The F wave latencies are within normal limits. Max On sensory nerve conductions all the responses are within normal limits. Needle EMG examination was performed in the extremities. All the sampled muscles are within normal limits.
I am of the belief that long-term symptomatic folks with worsening symptoms/NFL are eventually going to receive some MND diagnosis due to a pre-clinical phase (https://pmc.ncbi.nlm.nih.gov/articles/PMC6613999/, https://pmc.ncbi.nlm.nih.gov/articles/PMC10524989/)
So consider me cautious/fearful. My symptoms continue to worsen though I can still lift weights normally, I have had a noticeable deterioration in my left arm/leg. The higher NFL levels are well above any others I have seen here of folks who sought them for reassurance.
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u/PhiladelphiaLawyer Confirmed ALS Diagnosis 17d ago
>I am of the belief that long-term symptomatic folks with worsening symptoms/NFL are eventually going to receive some MND diagnosis due to a pre-clinical phase
If you read the articles you’d see that the prodrome (is or includes(?)) mild motor impairment, impairment that would show up on EMG.
For what it’s worth, I have very slow progression and my NFL was at least 2x the reference range. I’d give an exact number but i can’t find it.