When the numbers all turn up Cora
If life is a pretty considerable ride of highs and lows, life with MS is a quadbike, through the grand canyon… on fire…
But every so often we hit a high, cruising at altitude over the mountains, throwing our hats in the air and laughing.
Today is one of those days.
The feedback from the MS multidisciplinary team was not good following my MRI. Things looked so troubling as to constitute a breach of the Geneva convention and the Swiss delegation of the UN had started picketing outside my flat. The challenge lay with a single number on the reams of blood tests I get every month: the absolute lymphocyte count.
Lymphocytes are the generals of your immune military force, they identify new threats and both attack the threats themselves and coordinate a wider immune response. They say that to a hammer everything looks like a nail, well to my generals everything looks like enemy troop movement… the toaster… particularly warm jumpers on sale… sudden changes to the S&P… top 10 streaming songs… all trigger an immune response, but most importantly so does the myelin surrounding my nerves.
So we destroy all of the generals!
Well, no, because if we destroy all of the generals then who is going to tell the troops to move in when there really is an enemy incursion. Luckily we know that a particular kind of general, lymphocytes expressing CD19 and CD20, who we will call Geoff, are the ones that most frequently mistake passing Nissan Micras for tanks. So our task is to fire everyone named Geoff. The problem is that some Geoffs aren’t the problematic Geoffs we’re after, they’re Jeffs, Chaffs… and… Phleffs…
So when we target specific lymphocytes with antibodies in the form of Ocrevus, we also lower the absolute lymphocyte count. A normal lymphocyte count begins around 1.5 parts per nanomole, and while microscopic burrowing mammals might seem like a strange benchmark against which to compare, I’m no doctor and it seems to work for them. My lymphocytes need to be 0.8 to continue Ocrevus, at last testing they were 0.6.
So the multidisciplinary team decided that the best thing to do, given how they looked at my MRI and kept squinting and turning the image upside down looking for actual brain between the lesions, was to do away with the safety guidelines and go for Ocrevus anyway. Ok so there’s some new evidence that it might actually be safer at 0.5 than previously thought, as long as a specific subset of general, who we’ll call Malenia, who is especially competent, is prevalent enough that we can manage without Geoff.
So we tested today to identify our Malenia and Geoff numbers as well as our overall general count.
Remarkably we find that the overall lymphocyte count has climbed… to 0.8.
I laugh. A lot. Loudly.
And so now it’s all go. The coordinator is ready to get in touch and a full day infusion is ready to be scheduled. The infusion will fire every Geoff it finds and we will be protected for another 9 months.
I really can’t describe the relief I feel, the weight of vigilance I’ve been carrying seeing every twinge and slip as potential evidence that my monster has found me. I won’t relax until the infusion is complete, but I am so glad that help is on the way; as my MS nurse messaged to tell me ‘reinforcements are right on time’.
In 9 months we’re going to do this little dance again, consider the risks, walk the terrifying line. But today… today my lymphocytes hit 0.8.