Atypical presentation?

[Tkrtoad]

I had the flu followed closely by relatively mild COVID almost a year ago. About two weeks after COVID recovery, I started to notice an occasional, slight slur/dysarthria (a single word every couple of days). After about a month, it progressed to a point that my wife heard it and it progressed for another few weeks and has plateaued ever since. I also have mild dysphasia (swallowing) and tongue fasciculations. There are no other sensory or motor issues. I saw a neurologist in June and I had one area of hyperrefexability (URE) and positive right Hoffman, glabellar and palmomental signs. My neurologist ordered blood work and an EMG/NCS (including tongue) and saiid my clinical signs were “highly suggestive” of isolated bulbar ALS I'm still waiting for the EMG/NCS but the blood work is complete and shows I am positive for GQ1b gangliocide antibodies.

Those are associated with the Miller Fisher Syndrome variant of Guillain Barre and the more general Anti-GQ1b antibody syndromes which fall under the GBS umbrella. My neurologist thinks the elevated antibodies are not relevant because they are only mildly positive.

But, since it's been almost a year since symptom onset and the titer values in GBS decrease over time, I think it may have been much higher at symptom onset (I’ll never know). And GBS swiftly follows infection with quick ramp up and then plateau.

Still, the fact that it's going on a year with no recovery (but also no progression) makes me also doubt it's Guillain Barre related. Except for those very specific antibodies...

Among the possibilities of IBALS, an autoimmune inflammatory syndrome, or long COVID attacking my cranial nerves, are all plausible at this point? Any one much more likely?

One more detail - my cranial MRI is normal but my cervical MRI shows spinal stenosis/rediculopothy L4/L5 (normal for my age, 56, but could still factor in to symptoms).

 

[Tkrtoad]

It’s been almost two weeks without a reply. Did this post fly under the radar or is it so perplexing that no one has any input?

I’m understandably nervous regarding my upcoming EMG/NCS and I’d appreciate any informed opinion.

 

[Nikki J]

Sorry you didn’t get a reply. It wasn’t intentional. Sometimes posts get buried and we forget there wasn’t an answer

Your emg will of course be helpful and do feel free to share the report ( deidentified)

I don’t know what your neurologist saw on exam. It is certainly true that there are post covid neurological presentations that can cause many varied symptoms. The timing does make one suspicious for a post covid or general post viral etiology. So,ething autoimmune is possible too I suppose. The rest of your panel was normal? Did they consider a repeat?

When is your emg?

 

[Tkrtoad]

My EMG is in a month (a needle in my tongue - ugh!).

I understand ALS weakness is “insidious” but when you first notice it, it seems “acute”.

 

[lgelb]

The more insidious, the more reason to worry, but that is true of many CNS disorders.

Wondering if you were imaged for stroke/bleeds/clots given the rapid plateau.

 

[Tkrtoad]

I forgot to mention my MRIs. I’ve had two cranial MRIs (7 mos apart) - both were clean. I also had a cervical MRI, which showed age appropriate L4/L5 stenosis/ rediculopathy.