MS, Ocrevus and PML.
Hey all. I was officially diagnosed in November 2022, when I landed myself in the hospital (for a 7 month stay due to paralysis from the ribs down) and was started on Ocrevus. Since then I’ve often found myself going down the rabbit hole of being terrified of getting PML and dying. Can you please give me your strategies of how to avoid these rabbit holes of worrying so much? Any advice/personal stories is/are welcome! (Unrelated stupid question: is it safe to dye your hair while on Ocrevus? I’ve never had any issues with dying my hair before, but am all of a sudden terrified of doing anything just incase I have a reaction) thank you!!
Hey hun it’s perfectly normal to feel like ur going down a spiral i do all the time, but u just have to pick ur self back up and carry on. I was diagnosed over night with ms. I was out the night it happened. I started to feel pins and needles in my legs and feet and put it to my diabetes going low. i Went home to go to bed and still felt unwell. Woke up and completely couldn’t walk so phoned the hospital who said get to the hospital asap. Got into hospital and went for a mri scan where it shown on the scan that iv got ms. Then spent the next 5 months bed bound. Then slowly I started to get into a wheelchair and now I can do transfers all by myself. But it’s hard work u just keep to keep fighting.
@Sonia2022 So we have very similar stories then! Finally! Someone who fully gets what I’m going through!!!! Some days it’s hard to keep fighting.