Life and a Relapse
Having a really bad time again at present, significant relapse has knocked me back again, mobility has deteriorated. Been off treatment for two years now, got worse on Ocrevus so that was stopped, tried Kesimpta, had a severe reaction to dose 1, that was stopped, took a while to recover from that. Steadily got worse the last year, finally visited my consultant who was surprised I wasn't mobile anymore and sent me for a new mri, know suprise I had a lot of new brain lesions, know going for a spine mri because of the mobility issues. Diagnosed in 2019, was climbing mountains then, now can't walk at all, fully wheelchair bound. I have been retired from work, largely due to cognitive issues, but appreciated that, but at 54 it is a shock to the system, and gave me something new to take on. Now the team are urgently trying to get me onto Mavenclad, bloods aren't right yet, got another go today. Not a rant really, but feeling pretty sorry for myself, sod this disease, sick off the you don't look sick comments.
Sorry you are going through it. I can completely empathise with your point about climbing mountains not long ago and things being so different now. I still feel a bit bewildered that my body can’t/ won’t do things it did so easily before! I also had to retire recently. I know it was fortunate to have had the option but it wasn’t the way I expected to end my career and it is still a huge life change , definitely a shock to the system! Of course you are going to feel sorry for yourself. Good luck with getting on to something that can help. You are not alone.
Gosh you've had a tough time. It must be terribly frustrating. Fingers crossed for new treatment.