NEDA. Sounds like nada. And ‘nada’ is the exact amount of damage MS has done since I’ve started Lemtrada.
NEDA means ‘no evidence of disease activity’ which is the best result I could get from an MRI scan. I mean I could be told that my lesions are shrinking but since there’s no cure for MS I’m pretty cynical about that – or rather, I don’t believe it actually means anything.
Anyway, it was news I needed to hear and helped me put my positive pants back on. I’ve been feeling a little disillusioned about my choice to have Lemtrada recently. I’ve not relapsed since being diagnosed, but for some reason I feel worse which just wasn’t making sense. And when I say worse, I’ve found I’m having to make new adjustments. When cooking, I’ve found I’ve needed to sit at the kitchen table to do the chopping and prep of a meal because standing up for a long time is getting hard! (Note to self – buy a perching stool). When going into town, I’m having to find a bench to sit on and take a break whilst Dave pops into a shop. Things are just feeling a bit tougher.
Talking to my nurse put it in perspective though. He rightly pointed out that I’m still only 7 months post recovery of my second round of Lemtrada. It’s winter which makes all of us feel rubbish and it’s really hard to recover from the Christmas period with MS. I moved house. I’m still adjusting and recovering from life being crazy!
So the good news is that I might not be getting better, but I’m certainly not getting any worse. Since I’ve had my treatment people always ask “has it worked?”
If by “worked” people mean that I’m not getting worse, then I can finally now confidently say that yes, it has.
If this is as bad as I’m going to feel then that’s a small price to pay to stop things getting worse. And I’m delighted with this news.