I added a new letter to my personal file of hospital correspondence this week, a file that is almost as thick as my real-life medical notes. Like most MSers, these notes resemble a tumbling, crumbling mound of papers precariously bound together with elastic bands. I’m not allowed to look in these notes; in fact, I got reprimanded for doing just that back in the days when they used to leave them on the table next to me during my monthly infusion. Once, I managed to flick through a few juicy messages between my Neuro and Nurse dating back to my diagnosis days before the notes were whipped away from me. I read that my Neuro thought I would need a lot of support from my nurse at the start (he got that right!) and I was tickled (as well as a tad bit proud) to read that he called me ‘stoic’ in a later note. I sure have needed to hold onto that stoicism over the past few years!
Anyway, this latest letter finally gets the ball rolling on my switch of treatment. I’ve been given a swanky new neuro, at least, he is new to me; he has actually been in the game for quite some years. In fact, he is the resident expert in MS and high efficacy treatments and therefore better suited to my brand of MS. He also happens to be rather nice, which is always a bonus.
During our clinic, my new neuro sat me down for some thorough questioning. He left no stone unturned as he tried to unravel the state of my MS and my story thus far, concluding, as did my previous neuro, that I was not in the best of shape MS-wise and would need prompt action to again try to slow the disease progression. In my letter he states that Tysabri is likely to be “partially effective but it is not stopping all disease activity”. We spoke about all the options available to me, which included stem cell treatment, of which I’m too chicken to try at this stage. Eventually we settled on Ocrelizumab as the drug which has the highest efficacy and least severe side effects.
You may remember that I was terrified of changing my treatment plan when it was first mentioned, but over the past few months it feels as though I have been deteriorating and am therefore in very obvious need of a shake-up! I will need to undergo the usual tests before I can officially switch – my brain will need another MRI scan and my bloods will need to be checked. Dr New Neuro even suggested a lumbar puncture to err on the safest side of caution, but he quickly ruled that out when he saw the look on my face! Once all these checks have been made and I have been clear of Tysabri for 6 – 8 weeks we will be good to go, and I cannot wait!
2 thoughts on “News From A New Neuro”
Great News, W-D!
It’s super important to have a clinical team you trust – in fact, from the admittedly few chat I’ve had in person but also some of the data from the MS Register, people who are worried about treatment side effects or treatment switches tend to not feel safe with their clinicians, pointing to a problem of knowledge and trust more than a physiological one.
I have only heard good things on Ocrevus, some of which I’ve uttered myself!
Thanks, Will. I’ve also only heard positives from people on Ocrevus, which does help enormously!