Glycine receptor antibody? Swallowing fluctuations?

[BlsdMama]

Anyone else been tested or positive? Curious.

I'm positive and Mayo thought certainly a more rare variant of Stiff Person. However, thus far, have not responded to meds. My MND doc at our university thinks PLS. Mayo admitted this week that maybe MND is what it is afterall. But first we try a more intense schedule of IVIG.

Back in clinic in early June. I think we need to start talking van accomodations.

Can I ask if any of you experienced fluctuations in your ability to swallow? My understanding of PLS/ALS is that it is just a steady rate of decline. My leg is like this. However, my ability to swallow is fluctuating. I had an early cookie swallow and it showed a mild delay but nothing alarming. It is getting harder sometimes to move food. I'm not choking at all, it just seems as though it moves at a snail pace but not all the time and not every day - it most certainly fluctuates. (And, oddly, most definitely happens more if I consume/drink *very* cold things.)

 

[Trippy]

I find my swallowing worse first thing in the morning when I'm at my most sluggish. Often cough on that first sip of liquid. Food goes down slow for me too but I don't notice a lot of fluctuation, though maybe a little. I always do chin tuck when swallowing. If you don't know how, ask your clinic team. Cold increases spasticity so it doesn't surprise me that it might affect swallowing ability.

 

[ShiftKicker]

Trippy brings up a good point- and something I thought of immediately too- cold can trigger or increase spasticity. Your clinic should have a person who can give you some tools and tricks to help with swallowing. It may just be no more cold drinks?

I get way slower when I eat particular things- and I do not drink or eat very cold things any more as this seems to trigger jaw clonus/fatigue and things going down the wrong pipe.

PLS can plateau or have sudden jumps in progression, from what I understand from others' posted experience. Stress, illness and injury can help increase symptoms. My progression has been pretty steady, but many others have reported a sudden loss or a long period of no real progression.


Re: Glycine receptor antibody- I was tested for a whole host of things right at the beginning. One of them was for Stiff Person Syndrome and it came back negative. I sincerely hope you respond to a more vigorous treatment for SPS and you end up not actually belonging here despite your MND specialist's diagnosis.