Diagnosed - Now What?

So I’m writing this a month after being diagnosed with multiple sclerosis, and about two weeks after my previous blog post on this particular topic. It goes without saying that, even though I was somewhat expecting this diagnosis, having it confirmed, spelled out in cold hard facts did hit me somewhat harder than I’d expected. I guess finding out that you have something inside you that, while mild and treatable, does not have a cure does leave a mark on your psyche. 

And that’s just what the situation is with multiple sclerosis. There are treatment options available, and they’re frankly mind-boggling, allowing patients to live a normal life. And I personally don’t consider my case to be somewhat mild too, which makes therapy even more of an option for me. However, there’s no known cure for this disease, and with MS being an autoimmune disease, any treatments affect the immune system’s ability to combat other diseases. So yeah, I was a little shell-shocked after the news dropped. To be honest, I think I still am, even a month later, although the timing of the news was quite fortuitous. The day prior, Artemis 2 had launched, the first crewed lunar mission since Apollo 17, which was like catnip for a space nerd like me. I actually remember sitting in the waiting room of the neurology outpatient department and watching on my phone as the spacecraft hurtled downward towards perigee and trans-lunar injection. And even after, the copious amounts of moon joy provided by both the crew aboard Integrity and back on the ground in Houston was a much-needed source of comfort in the immediate aftermath.

However, it’s not exactly the end of the world! It’s not terminal, in my case at least and in any case, my mind tends to work best when confronted with situations like this. And so, my mind immediately went into crisis management mode. What needs to be done? What can I do myself and where do I need to wait on other people? Who am I waiting for? What has priority, and what can wait? Those were the thoughts that dominated the immediate aftermath of the diagnosis. Hey, I’m German, I guess I’m predisposed towards drafting battle plans! On a more serious note, mapping out the next few steps in such a way really helped me to come to grips with the news, and also gave me back a feeling of being in control. I’d already had the first inklings of a plan coalesce in my mind as I left the outpatient unit, and these have only solidified further since.

One of the big things on my to-do list was meeting up with a good friend of mine, one who I hadn’t seen in far too long, and just talking to friends. No matter how mild I thought my case was, it was still important to talk things through, but also laugh and just generally shoot the breeze. I guess that’s one of the biggest bits of advice that I can give here: Just talk to someone. No matter whether it’s your friends, family, or a therapist, but talk to someone about it. You’re not alone! Unfortunately, at the time of writing, I still haven’t managed to nail down an appointment with my own therapist, but I’m working on that one.

Beyond my own battle plan, things were beginning to move too. My neurologist and I had discussed possible treatment options for the disease in the very same meeting that he’d told me about the diagnosis, and he’d also mentioned that it would be a good idea to get my vaccinations updated, at least the major ones such as Flu and COVID-19. Once I’d agreed to proceed with therapy, he’d immediately forwarded my details to the dedicated MS team at Cork University Hospital. The very next day, I got a call from one of the MS nurses on that team to introduce themselves and discuss the next steps. In concert with their actions, I also reached out to my GP for help with the vaccination refresh, although that particular issue would take quite a while longer to get sorted, since my GP only had the Flu vaccine available. I got the COVID refresher a few weeks later at a local pharmacy. At the time of writing, I’m in a three week cooldown period to give my immune system a chance to recombobulate itself before therapy proper kicks off. Speaking of therapy…

Pick your poison! - Seriously though, when your medication comes with a user guide instead of a leaflet, you know that things just got real!

Before I get into this, let me just reiterate that as of right now, there’s no known cure for multiple sclerosis either available, in testing, or even theoretically feasible. The only way to deal with MS is to slow down progression, reduce the number of flare-ups, and manage the symptoms. Having said that, these treatment options are evolving at an eyewatering rate! The therapy option I went with got FDA approval for use with MS in 2017, whilst the other two on the list were approved in 2020 and 2022 respectively. It wasn’t too long ago that the disease was effectively a straight path to a wheelchair. There’s a reason why it was such a major plot point in The West Wing back in 2000! Yet fast forward to 2026, and the therapies available means that you can basically live a normal life.

But what are these therapies? Well, in generally they’re called monoclonal antibodies. Antibodies in general are a crucial part of the immune system, and monoclonal antibodies are basically just antibodies that are produced by a specific cloned white blood cell, either from a human or a donor animal. It’s worth remembering that only the original cell was provided by a donor, there’s no ongoing cell or organ harvesting needed, so you can put your tin foil hats back, dear internet! Either way, these specially harvested antibodies are designed to latch on to a very particular type of white blood cell, B leucocytes in my case. In doing so, they block a certain molecule on the cell’s surface that is responsible for attacking the myelin sheath around neurons that I mentioned earlier. 

Having said that, there is of course a catch, and a considerable one at that. As one of the main producers of antibodies, B leucocytes form a crucial part of the human immune system. As such, any therapy that works by neutralising these cells will invariably lead to a weakening of the immune system, leaving patients more vulnerable to other diseases. That’s the reason why my neurologist recommended getting new COVID-19 and flu shots before starting therapy. Jaysus, with all the big words I just used, you’d almost be forgiven for thinking that I actually know what I’m talking about. Anyway, this therapy option should significantly reduce the frequence of MS relapses, allowing the body to regenerate some of the damaged neurons, as well as create bypasses for damaged nerve fibres. In theory, this should allow for a weakening of some of the symptoms of MS. 

In my case, my neurologist mentioned three possible drugs that could be used. I’ll spare you the names of the actual antibodies and just use the brand names, my keyboard is suffering enough as it is. The first option is a drug called Briumvi, which is administered via an IV infusion that takes an hour and needs to be refreshed every six months. The second medication is called Ocrevus, which is administered via a ten minute subcutaneous injection. This too needs to be refreshed every six months. The neurologist also mentioned a drug called Kesimpta as a third option, which would come in the shape of a monthly self-administered injection. Given how scatterbrained I am, I opted not to go with this particular option. In the end, I opted for Ocrevus on account of the shorter duration of the administration procedure. 

That being said, for some time, I didn’t even recall the name of the drug I’d opted for. This was due to a bit of a mix-up shortly after diagnosis. For some reason, the information package I received, whilst containing information on Briumvi and Kesimpta, did not have any leaflet about Ocrevus. I hadn’t managed to commit the name of the drug to memory when my neurologist told on account of just having so much information thrown at me at once. It wasn’t until an email about three weeks later that I actually learned that the drug I’d opted for was called Ocrevus. 

The number of cars on the road at Cork University Hospital should give you a good idea of just how busy this place is, even on a normal day!

To make it abundantly clear, this is not meant to be a criticism of the MS team. Cork University Hospital is the largest trauma centre in the south of Ireland and as such it’s in a state of perpetual controlled chaos at the best of times. Most of the time, it’s closer to absolute bedlam. Either way, it is an extremely busy place, one that, at the time I was diagnosed, was still reeling from the aftereffects of a norovirus outbreak, which is a crappy thing to be dealing with at the best of times. In such a situation, mixing up some paperwork is pretty much understandable, and I won’t fault the team for it. Indeed, it seems that the HSE is firing on all cylinders in my case, if the reactions of a good friend from Canada about my ongoing medical misadventures are anything to go by.

Either way, I have a way forward now. The medication is set, I’ve been in contact with the Infusion team at CUH, we’re finalising the last few blood tests that are apparently needed before moving on to the actual therapy. To be perfectly honest, I can’t wait to kick things off, both because of the issues and because I just want to know how these things actually work. My nerd brain has been triggered and it’s finally time to stop MSsing about!

No, I’m not going to apologise for that pun!