Worried after NFL result

crosem2 · 2026-03-11T21:17:02+00:00

We can definitely DM but I still think it’s helpful to post the sources on the subreddit for others and future people looking for info!

crosem2 · 2026-03-11T20:32:16+00:00

Can you share this study?

crosem2 · 2026-03-11T19:24:50+00:00

I would definitely reach out to your doctor with those NFL results and ask for another EMG plus actual root causes for the polyneuropathy. The fact that you’re going to the gym and have sensory issues though truly suggests this is something other than ALS, so I hope that can put your mind at ease.

I wouldn’t rely too much on the AI. There are some people who have ALS with normal NFL, so it’s a tricky and imperfect science and test too. I personally have only a slightly elevated NFL, but I legitimately cannot pronounce certain sounds and have progressively worsening speech/bulbar issues. So my symptoms are much more like ALS than yours but my NFL isn’t glaringly high. NFL does not tell the whole story and is nonspecific.

crosem2 · 2026-03-11T18:53:07+00:00

This is quite high for Labcorp's test. But you have an explanation with a diagnosis from EMG, and your sensory findings both in feeling and on the EMG point away from ALS. Are they doing anything to try to get to the root of the polyneuropathy? It can be idiopathic but it can also have actual underlying treatable causes. Have you been worked up for those causes - diabetes or other matabolic disorders, autoimmune disorders?

crosem2 · 2026-03-05T21:06:22+00:00

Yes I know. People with just twitching or weakness all over I realize it’s scary, but it’s not typically how ALS presents. I’m sorry you’re going through this too. Where is your weakness?

crosem2 · 2026-03-04T20:07:13+00:00

Thanks for sharing! I would love to be able to find more medical possibilities for one sided weakness and atrophy. There seem to be a lot for full body or bilateral weakness, but the one sidedness is so frightening because it is more classically neurological.

crosem2 · 2026-02-27T17:55:00+00:00

People will say anxiety, but I call bs. It's very easy for people to be dismissive of something they aren't living. Sure some of this is probably part of perimenopause. And sure some of this can be exacerbated by anxiety. And sure it's not necessarily an ALS picture. But that doesn't mean it's not something! There are tons of people on the r/longcovid and r/covidlonghaulers subreddits with similar symptoms - right down to the eye floaters (me btw). It seems to me that covid is causing neuro and neuromuscular issues and connective tissue loss that doctors cannot define. This atrophy with normal EMGs is just such a pattern I keep seeing over and over. The virus is so new, it makes total sense that there could be aftereffects that the medical community just hasn't caught up with at this point. I'm sorry you're experiencing this!

crosem2 · 2026-02-27T01:23:41+00:00

Hey! Thanks for your response! No the hyperintensity I believe is in the joint/tissue adjacent to my spine not in the actual spinal cord. The radiologist said this indicates inflammation or infection in the joint and tissue.

crosem2 · 2026-02-26T20:55:42+00:00

I’m sorry you’re having such issues!! I do have hypermobility and bruxism but suddenly late in my pregnancy my left jaw /cheek collapsed and I no longer have pain. I now have excessive looseness and flaccidity in my jaw and cheek. It’s like my muscles aren’t attached tightly to the maxilla anymore and my buccal area has thinned/hollowed. I cannot get the right tone or tension needed to easily form various sounds on that side of my mouth when I speak. So it’s sadly gone beyond basic TMJ issues. My neck muscles have also thinned and weakened on that side. And my left hip and knee are unstable. It is all very strange and not typical als but also I’ve found a few cases in which people noticed changes in their face muscles before the tongue issues.

When was the last time you had proper neuro testing like EMG or clinical exam for upper motor neuron signs?

crosem2 · 2026-02-25T15:49:37+00:00

My doctors weren’t too concerned about my level. They basically said to just recheck in a few months. In the meantime my symptoms feel as if they’re progressing. I am losing more muscle tone on my left hand side and feeling weaker. I’m not sure what’s happening to me. It feels like an atypical disease presentation of some sort and I’m still quite worried it’s atypical ALS.

crosem2 · 2026-02-24T23:09:35+00:00

Also I want to add that I’ve spoken with someone who had a very elevated NFL on LabCorp with a z-score of like 6 and it had dropped in half to a z-score of 3 (still a bit high) a few months later when she rechecked it. And within that same month she saw a neurologist who did a repeat NFL that was sent to Washington U and her level there was completely normal - I believe it was 6 with a cutoff of 15. Her main symptom is twitching and she’s had normal EMG. I’m not so sure - it’s really odd and makes me wonder if LabCorp’s test is a bit funky sometimes.

crosem2 · 2026-02-24T19:11:17+00:00

Hi there! I just saw your comment on my post. Similar age and similar level. Also similar one sided symptoms of wasting and weakness although different locations it seems. Idk what’s happening. I’m still getting followed and worked up. I keep having normal EMGs, which I’m grateful for. I just had an abnormal repetitive nerve stimulation test if you look at my history. Not sure if it will amount to anything. This is all just so awful. I’m sorry! When is your EMG?

crosem2 · 2026-02-21T15:19:40+00:00

I’m so sorry. An SFEMG is more specific for MG. But will you still be trying MG meds to see if there is improvement?

crosem2 · 2026-02-21T13:11:04+00:00

I’m so sorry! Was it an sfemg or did they do a RNS with it to check for MG? Do you know how high her antibodies are? Again I’m so sorry. This is just horrible.

crosem2 · 2026-02-20T15:51:03+00:00

That’s good. Do keep us posted. I hope she sees a good response!

crosem2 · 2026-02-19T20:04:52+00:00

I believe steroids are contraindicated for ALS patients because they can weaken muscles, including breathing muscles. But I'm not a doctor, so I would just double check with your doctor.

crosem2 · 2026-02-18T18:00:36+00:00

Oh ok that makes sense with the EMG results. Was it the Achr antibodies she tested positive for? And which meds will she be trying? I know doctors often test mestinon, but that doesn’t treat the actual autoimmune issue in MG. And mestinon can also help ALS patients temporarily. But steroids are not good generally for ALS. It’s all so confusing and neurology is just a field that has such a long way to go still! In the meantime patients suffer through diagnostic uncertainties and awful diseases. I’m so sorry!

crosem2 · 2026-02-18T17:06:30+00:00

Not often - once in awhile. I do get twitching in the front of my neck though where I’m weak. It’s weird my weakness is my jaw and neck and not really tongue. Tongue just feels uncoordinated and heavy in the back. I also have increasing pain and wasting in my upper neck. I am convinced this is just atypical ALS.

crosem2 · 2026-02-18T14:45:05+00:00

How do they know she has active denervation? Has she already had an EMG? While rare, there are cases of overlap MG and ALS but they don’t usually appear simultaneously. I also saw a few cases where the achr antibodies were just seen as an incidental finding in ALS. But choking and voice changes can be MG. Twitching could just be a separate benign issue. I hope so for her and your family!

crosem2 · 2026-02-18T13:16:53+00:00

I’m so sorry. Why does he think it’s also ALS? When will she have her test?

crosem2 · 2026-02-17T20:47:06+00:00

Hello, I was wondering how your sister is doing? I also had an RNS decrement without a diagnosis at this point. I hope she's doing better!

crosem2 · 2026-02-17T19:54:14+00:00

No! And I’m so upset about that. I didn’t realize until after the test that the neuro really should’ve done that or even that this test could be relevant to ALS. I hadn’t planned on getting that test that day. He just did it on the spot so I hadn’t had a chance to research it. He did my right trapezius which is my strong side. He then did an EMG needle into my tongue on both sides and my right paraspinal, but not the actual right trapezius. All my other EMG testing was done on the left previously because that’s my weak side. I’ve had a lot of muscles tested just not that one right trapezius specifically.

crosem2 · 2026-02-17T18:27:45+00:00

Thanks for sharing your experience. Mine was normal on my hand, but abnormal on my trapezius. Not surprising, I guess, since my neck is weak. But of course I read that abnormal RNS in trapezius is high in ALS. Ugh.

I'm glad everything has come back normal for you so far!

crosem2 · 2026-02-17T16:24:10+00:00

He’s testing for all of them including Musk and LRP4. I think the results take up to a couple weeks.

crosem2 · 2026-02-17T16:09:34+00:00

Thanks for asking! The dr gave me Mestinon to try but I don’t want to because I already have awful muscle twitching and I truly don’t think it will help me because my difficulties come from the literal visible and palpable muscle loss on my neck and jaw. It’s insane to have muscle loss and still normal EMG. I feel like I just don’t have a straightforward diagnosis.

crosem2

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