Thursday 13 January 2022

Failing Ocrevus and an atrophied lesion in my spine

Yesterday I had my appointment with my neurologist to get my end of year report and the MRI results. 

I had an idea that he would say something had happened, I'd asked for the MRI because I'd been having some muscle tightening in my legs and the twitching was more pronounced. I was expecting to be told relapse but to be told an old spine lesion has atrophied was unexpected. 

He also mentioned that my CD20 B cell count before the November Ocrevus treatment was extremely high. It had been before I started O last year but it should be very low once you're on O and mine isn't. 

Ive popped into London today to Hammersmith for some blood tests - one to check the CD20 B cells and a bonus one to check for Covid antibodies 😄 (I have my 4th jab on Saturday so now is a good time to check the levels from the 3rd one) - its going to be interesting to see what that actually says .... if O isn't killing off the B cells you'd thing they slurped up the vaccine and made antibodies ..... or alternatively did the O kill any that were born???

The T cell test will happen after the 4th so again that might have some interesting results.

We talked about Rituxan and Cladribine (mavenclad) as alternatives as well as another round of O but at higher dose than the previous 3 with more checks in place to see what it's actually doing in when my 4th round is due in May. I also asked about the possibility of a 3rd round of Lemtrada but was told that Lem is less effective with each round and that a 3rd wouldn't be very effective at all..... that makes me sad 😥

All somewhat un-nerving but whatever the conclusion I'm going to carry on kicking the MonSter in the balls at every available opportunity.

Dry January is in full effect along with healthy eating and my annual lose some weight effort. It's actually going really well - mostly because Gareth is doing it too - properly this time because he wants to not because I've bullied him into joining / helping me.

That really is all I have for you this time I'm afraid, everything else is just very BLAH to be honest, working from home going nowhere, seeing nobody and just chilling. 

Actually one more thing, my PT sessions ...... I'm getting stronger, I got off the floor twice on Monday using my desk to help me up, but I did it myself in 1 attempt both times 😎

Is it wrong to celebrate that I'm now less scared of falling because I might be able to get up with the help of inanimate objects??

stay well 

much love


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