BlsdMama
Active member
- Joined
- Dec 5, 2016
- Messages
- 98
- Reason
- PALS
- Diagnosis
- 05/2017
- Country
- US
- State
- IA
- City
- Cedar Rapids
I have a working diagnosis of PLS. I’m aware of the statistics. So far two clean EMGs.
Had a Neurology appointment at my research hospital, not Mayo. Mayo has dx’d PLS as well but because a glycine receptor antibody was found a trial of IVIG for Stiff Persons was ordered. I’m about seven weeks into my twelve week trial. No improvement in rigidity or spasticity.
My appointment was disappointing. My right leg is weak but now my left leg has very hyper reflexes as well. Two oddities noted - my Babinski is now gone in the right foot? I have a shallow area that is new in the right foot - inside curve. Clonus is present and stronger in the right foot. It is newly present in left though weak.
For those of you diagnosed - were you initially hyperactive reflexes and later hypoactive?
Doc tells me a new EMG is coming my way after the trial is over. No surprise. We’re all waiting for it to go bad unfortunately. (I also have a flat muscle in my calf.)
But, Mayo called out of the blue the Monday after my exam and they want me back up there in two weeks. I’m guessing that isn’t good news. Initially it was supposed to be the end of February.
Thoughts?
Had a Neurology appointment at my research hospital, not Mayo. Mayo has dx’d PLS as well but because a glycine receptor antibody was found a trial of IVIG for Stiff Persons was ordered. I’m about seven weeks into my twelve week trial. No improvement in rigidity or spasticity.
My appointment was disappointing. My right leg is weak but now my left leg has very hyper reflexes as well. Two oddities noted - my Babinski is now gone in the right foot? I have a shallow area that is new in the right foot - inside curve. Clonus is present and stronger in the right foot. It is newly present in left though weak.
For those of you diagnosed - were you initially hyperactive reflexes and later hypoactive?
Doc tells me a new EMG is coming my way after the trial is over. No surprise. We’re all waiting for it to go bad unfortunately. (I also have a flat muscle in my calf.)
But, Mayo called out of the blue the Monday after my exam and they want me back up there in two weeks. I’m guessing that isn’t good news. Initially it was supposed to be the end of February.
Thoughts?