BlsdMama
Active member
- Joined
- Dec 5, 2016
- Messages
- 98
- Reason
- PALS
- Diagnosis
- 05/2017
- Country
- US
- State
- IA
- City
- Cedar Rapids
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.)
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.)