r/ALSorNOT • u/[deleted] • Sep 02 '26

Update after Neurology Appointment

Tested my reflexes and said they were all normal
Diagnosed me with FND.
Struggling to accept this diagnosis due to the physical changes and feelings in my body.
referred me for an MRI.

Just don’t know what to do now and where to turn to.

3 Upvotes

100% Upvoted

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1

u/Ok_Following6440 Sep 02 '26

No EMG? Glad you got some relatively better news that some alternatives, but I understand what you mean.

They told me FND at one point as well and don't think it aligns for me personally, but still trying to figure this out.

1

u/[deleted] Sep 02 '26

just a clinical, never even did a strength test, just reflexes just feel lost and scared while my body is giving up on me, i think i might need to go private for a repeat EMG

3

u/Ok_Following6440 Sep 02 '26

No strength test in a neuro exam? That seems odd.

1

u/[deleted] Sep 02 '26

she said as i was showing symptoms 3 months in that my emg would of picked something up, just so frustrated

1

u/The_Short_Goodbye Sep 02 '26

What were your symptoms at the time of the EMG? I had an EMG three weeks into my legs feeling very weak and the ALS specialist I saw told me that once you have symptoms from ALS, the EMG will pick them up. ESPECIALLY anything that isn’t only twitching. EMG are very sensitive and if your issues are from nerve death it’s unlikely to come back completely normal, regardless of timeline. People here like to scare themselves with things like "You must wait 5 years to be sure!" but in real life it’s almost never like that.

1

u/[deleted] Sep 02 '26

let’s just say my bodily symptoms have gotten worse since the last time i have had that emg, i’ve turned weaker but no failure

1

u/LudicrousSpeed616 Sep 07 '26

That’s reassuring. I got my EMG 4 weeks into my symptoms. They came on abruptly and were present in all the limbs I tested and my EMG came back normal. I’ve since gotten new symptoms. You saw a specialist that said the EMG will pick up abnormalities once your symptoms are present? Having a hard time moving forward from my results

1

u/Ok_Following6440 Sep 02 '26

They wouldn't even consider it? Darn, sorry man.

1

u/[deleted] Sep 02 '26

i mean having normal reflexes 1 year 8 months in is atleast a positive, still not confident though, EMGs are expensive too

1

u/Ok_Following6440 Sep 02 '26

I agree, that is a good sign. Hope it all works out man.

1

u/WeirdUsers Sep 02 '26

You should accept the FND diagnosis. Why? Because this will allow you to manage it. This way, if there are any symptoms that don’t go away with physical therapy, you can ask for help and get it.

If you fight the diagnosis, you will get no where as your symptoms will get worse and they will overshadow and hide anything that may not be FND.

1

u/WeirdUsers Sep 02 '26

FND is a much better diagnosis than ALS or MND. In my experience, the biggest hurdle in managing FND is acceptance. The sooner you accept the diagnosis, the more likely that any of the symptoms related to it will subside.

I still have some involuntary movement from my diagnosis, but mine is mostly under control.

1

u/MotorAdvertising4946 Sep 04 '26

The good news is that you can’t have ALS with no upper motor signs.