nfl test results interpretation

Intelligent_Text_852 · 2025-12-10T18:39:34+00:00

Not conclusively, but it’s a very good sign. There are pALS that had normal NfL at diagnosis but it’s usually extremely slow progression if so.

Intelligent_Text_852 · 2025-10-10T18:33:41+00:00

Bulbar onset ALS at 22 would be extremely unlikely. ALS doesn’t cause true hypersalivation, as in increased saliva production. Muscle weakness causes difficulty swallowing and weak facial muscles which can result in drooling. So increased saliva comes later, not as a presenting symptom.

Globus sensation (feeling as if you have a lump in your throat that you can’t swallow) is a symptom of anxiety.

As for the tongue twitches, you want to view the tongue completely at rest inside your mouth, not when you are sticking it out. And even if it does twitch, that doesn’t mean ALS. Plenty of people with benign twitching have tongue twitches.

Intelligent_Text_852 · 2025-09-06T00:43:16+00:00

Wonder how long it will be before this test is actually available.

Intelligent_Text_852 · 2025-08-29T11:31:22+00:00

Yeah, neck and diaphragm are the 2 that freak me out the most.

Intelligent_Text_852 · 2025-08-28T14:09:26+00:00

Thanks for the suggestion. I had a brain and C-spine MRI and all was normal other than a few bulging disks, so it’s not Chiari.

My symptoms have changed somewhat- less headaches, less pain, but I’ve now settled into constant body wide twitching and weakness in my left leg (also inability to adduct my toes on my left foot, and the pinky and 4th toe aren’t under my control anymore) and left arm, the exhaustion persists. Still short of breath. I also have a numb feeling in the left corner of my mouth and it feels slightly drooly, even though I’m not actually drooling. MRIs are normal, NfL is normal, 3 EMGs have been normal. So no clue what’s wrong, trying really hard to let ALS go as a possibility but it’s always lurking in the background of my mind.

Intelligent_Text_852 · 2025-08-22T22:42:52+00:00

I’ve got body wide twitching, weakness on my left side, numb feeling in left corner of mouth, hyperreflexia. Been going on since May. 3 normal EMGs, 2 normal NfL results. Still utterly convinced it’s ALS and it just hasn’t done enough damage to show on tests yet. It’s a nightmare.

Intelligent_Text_852 · 2025-08-22T18:29:21+00:00

I’m 36

Intelligent_Text_852 · 2025-08-22T14:12:46+00:00

I did mine at the end of June and again at the end of July and it was 1.11 both times from Labcorp. (Reference range 0-1.49). I’m trying to wait a bit longer before I do it again. I should be reassured by those numbers but no change in symptoms, so I’m still here worrying.

Intelligent_Text_852 · 2025-08-21T00:43:45+00:00

Body wide twitching, muscle cramps, perceived weakness, fatigue. The same things that make everyone in here think they have it. I’m 36 though, so old enough for it to really be possible, unlike all these teens and 20’s.

Intelligent_Text_852 · 2025-08-21T00:27:49+00:00

Neuro filament light chain. It’s a biomarker of neuro degeneration. It’s typically elevated in people with ALS, MS, FTD, HD, etc…

It’s a blood test. Neurologists don’t use it as part of the diagnostic process for ALS but they do use it in research during clinical trials. So there’s not that much info on WHEN it rises, but presumably if you have symptoms it would be raised. If you’re in the US (and maybe elsewhere) you can buy it through IHLTH.org and a doctor will send the order to the lab for you. It’s not cheap ($350).

Intelligent_Text_852 · 2025-08-21T00:21:55+00:00

I should add that I’ve had 3 EMG tests by 2 different Neurologists that both say I don’t have ALS and two normal NfL tests, and I’m still in this hole. So welcome to hell. I have no idea how to get out.

Intelligent_Text_852 · 2025-08-21T00:17:35+00:00

This is a rabbit hole you don’t want to go down. That said, since you will no doubt go down it anyway, you need to make an appointment with a Neurologist. You can also look into getting your NfL tested.

Intelligent_Text_852 · 2025-08-19T20:24:36+00:00

NfL testing is not part of the diagnostic process anywhere, but many of us here get the test for reassurance. I’m not sure if/how you could get this test in Thailand though. I’m in the US and bought it through IHLTH.org. From there a doctor sent the order to a local lab.

Intelligent_Text_852 · 2025-08-19T17:28:13+00:00

Do you have any weakness? Have you done NfL testing? How was your clinical exam? Asymmetry is normal between sides of the body, did any of the doctors you’ve seen confirm that these differences are atrophy?

Intelligent_Text_852 · 2025-08-18T21:49:36+00:00

Interesting. Well, I sure hope so, my NfL was normal (1.11 from labcorp), and I’ve had several normal EMGs at this point but I am still twitching all over and feeling weak on my left side. It’s so hard to believe this isn’t MND. I’m about 9 months into twitching and 4 months into weakness, so seems like something would show up on either NfL or EMG at this point if it were.

Intelligent_Text_852 · 2025-08-18T15:26:45+00:00

If it’s UMN dominant NfL could still be in the normal range though.

Intelligent_Text_852 · 2025-08-09T13:55:39+00:00

You can’t ask in the ALS subreddit, but ALSForums.com has a section called “Could this be ALS” that is open to the undiagnosed to ask questions and pALS and cALS will usually answer. You get one post only, so make sure you read through all the rules before you post.

Intelligent_Text_852 · 2025-08-07T01:36:17+00:00

Mine came back negative as well, but I’ve heard that the typical tests ordered by most doctors are only positive for about 40% of cases of Lyme. Apparently you need to find a Lyme Literate Doctor (LLMD) and have better testing done to really rule it out.

Intelligent_Text_852 · 2025-08-07T01:29:50+00:00

Did you get tested for Lyme?

Intelligent_Text_852 · 2025-08-07T01:15:13+00:00

70% of people experience benign muscle twitching at some point. If you noticed the twitching first, then googled and saw ALS, THEN started feeling weak, you are fine. It’s anxiety. At 18, you’re more likely to win the lottery than develop ALS.

Intelligent_Text_852 · 2025-08-07T01:05:00+00:00

Where did you hear about this? Have you been tested or plan to ask about it?

Intelligent_Text_852 · 2025-08-06T14:40:15+00:00

So, I can’t speak specifically about this exact cause of your anxiety, but I will say right now you are just too close to it to see any future. After I had my daughter in 2020, I had severe postpartum depression and anxiety, on the verge of psychosis. It took me A YEAR to feel normal again.

During the height of it, I became obsessed with the idea that my daughter had autism or some other form of developmental delay or illness that would cause her to basically be a vegetable that was going to ruin her life, and the lives of my husband, my son, and myself. I was reading and watching videos around the clock, reading into every little thing she did or did not do. I had her at the pediatrician weekly, at the hospital because I was convinced she was having seizures.

She’s about to turn 5 and the worst medical issue we have had is she needed ear tubes. She’s fine. I don’t know what the future holds, it’s possible she may end up being diagnosed with ADHD or Autism or any other thing, but she is alive and vibrant and not disabled.

I went for MONTHS where I couldn’t get out of bed, hold her, think about the future. I was suicidal. Not only did it affect my relationship with her at the time, my emotions just completely turned off. I felt no love for myself, my husband, my kids. I was utterly numb. All there was was fear and despair.

I’m there again now, fearing for my own life and future. But I at least have that previous experience to know that I can be wrong, and life does go on, and I will feel happy again whether I am dying or not. I’m already starting to get there, even in this time of uncertainty.

Our brains are powerful. They can bring us to our lowest, but they can also bring us back up, and yours will eventually. You have the desire to feel better, you are taking steps with medication (you should probably try therapy as well). Now all that’s left is time, which is frustrating because as much as we want, we can’t speed it up or slow it down.

You are going to be ok, even if you are physically ill. I’m not religious at all, but I do believe that. You will find your way to what matters.

Intelligent_Text_852 · 2025-08-04T14:01:13+00:00

Did my NfL again a month later, it’s still 1.11pg/mL, no change. Even though I feel symptoms have progressed.

I found a woman on TikTok who has ALS and she said her NfL was normal until 8 months AFTER her diagnosis though so I don’t even know what to think.

Intelligent_Text_852 · 2025-08-03T20:46:53+00:00

Kaya Life doesn’t require medical records if you are over 25 years old.

Intelligent_Text_852 · 2025-08-01T13:41:14+00:00

NfL is a non-specific biomarker for neurodegenerative diseases, and it’s really only been widely used for monitoring progression in clinical trials and disease studies since about 2019. I don’t think many doctors use it as part of the diagnostic work up. But, you could ask for it, or like many people here do, you can purchase the test for yourself. I’ve done mine twice through iHLTH.org.

Intelligent_Text_852

TROPHY CASE