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  • What tests did your doctors require before your ALS diagnosis?

    Posted by Community Member on May 27, 2026 at 9:21 am

    It’s my understanding, and jump in if you have information to share, Neurofilament Light Chain (NfL) is the only biomarker that doctors can no look for to determine if a person has ALS. NfLs are the most promising and widely used biomarker according to what I’ve read. Elevated levels in the blood or CSF indicate neuronal damage, and this can confirm diagnoses and can help determine the pace of ALS disease is progressing.

    I’ve also read about Phosphorylated Neurofilament Heavy Chain (p-NfH). This is another variant found in CSF that signals active motor neuron breakdown. I don’t recall my doctors testing for this but I plan on asking their thoughts.

    What tests did your doctors require before making a diagnosis of ALS?

    Community Member replied 2 days, 15 hours ago 3 Members · 2 Replies
  • 2 Replies
  • Community Member

    Administrator
    May 27, 2026 at 11:23 am

    It’s amazing the progress that’s been made in the last 15 years towards improved diagnosis. This will help close the gap between onset of symptoms-diagnosis-treatment.

    16 years ago, my diagnosis was based on 3 MRIs, EMG, lab tests, and physical testing.

  • Community Member

    Member
    May 27, 2026 at 1:24 pm

    10 years ago, I had EMGs, nerve conduction tests and physical assessments by two different doctors to determine my diagnosis. I’m thrilled to hear that there may be reliable biomarkers now, for diagnosis and determining progression.

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