Last Friday, I completed my loading dose and saw some improvement. Good News.
I still have no reflexes, can’t manage stairs, buttons, but put aside the walker that I had just started using.
I’m just wondering (realizing everybody’s different)…
- If working, did you have to take time off during the onset/initial treatment until you stabilized? If so, how long were you out?
- Was your driving ability stopped and if so, when were you able to resume (months/ treatments)?
- My plan is to use the return of my reflexes as a primary marker:
- Did any of you start OT PT right after a loading dose? Or other initial treatment?
I had my safety and PT assessment yesterday; OT may be a week or so. A few simple knee, toe lifts and squat reps hit me hard. I feel like I did pilates for the first time in ages.
I was lucky to gain a diagnosis within a few months of onset, but it seems to have progressed fast.
As far as the Ivig loading dose: Day 3, I was able again to walk short distances in my home unassisted and noticed my cold hand symptoms come and go (vs being constantly freezing). It’s almost as if it took me back a few weeks. Day 3, I woke up feeling like a paraffin wax treatment was breaking up on my hands and my feet. It was a beanbag type feeling. Before, I could feel outside stimuli, but it was had a thick extra layer sensation (stocking glove).
I had minimal side effects from Ivig with the exception of a slightly elevated temperature and the headaches by day three, despite Tylenol and hydration. The Benadryl seemed to help more than Tylenol for head. It’s been five days since I completed my dose. I don’t have any more headaches, but am pretty fatigued.