No more MSsing about!

So, I finally knew what I was dealing with. I had a diagnosis, a battle plan and therapy had been decided on, and the prerequisites had been sorted. Now, all that was left to do was to wait for my first appointment. It was time to take this eukaryotic bull by its molecular horns! And to be frank, I didn’t have all that long to wait. The call from the infusion unit at Cork University Hospital came just after I’d emerged from the post-vaccination cooldown period. They had appointments available, and much sooner than I’d expected. I received the call on a Friday, and my appointment took place the following Wednesday.

Don't let the weather-worn facade fool you. The Infusion Unit at CUH is top notch...once you find it!

If I could find the place, that is. You see, Cork University Hospital’s campus in Wilton is a warren of wards, clinics, departments, and corridors that has grown in every direction over the last decades. More construction work is happening everywhere all the time, both to further expand facilities and to modernise the older parts of the facility. I’d been there a few times already, mostly for MRIs but also for my Ides of March experience, a.k.a. the lumbar puncture I mentioned in the first part of this series. For the most part, I’d been able to find my way around the hospital with minimal guidance. Not so much this time. I’m pretty sure I ran into a minotaur or two whilst trying to find my way to the infusion unit, and it took the help of a porter for me to finally find the place…only to realise that I could have easily reached it from the bus stop the entire time.

It was only after I finished my session that I noticed just how close the unit actually is to the nearest bus stop. Yep, I felt like an idiot when I realised...

Either way, I made it with time to spare. Not that there was any rush, I knew that I’d be in for a few hours. The actual Ocrevus infusion was only supposed to take ten to fifteen minutes, but there was some prep work that needed to be done, as well as a post-procedure observation period that stretched the appointment out. It all started with another set of blood work, which turned out to be a lot messier than expected. My arm still looks like I was shooting up outside the train station. After cleaning up the crime scene, and whilst I was waiting for the all clear to come back from the blood tests, the pre-treatment medication arrived. Which in this case meant a Berghain’s worth of pills, a cocktail of antihistamines, paracetamol, and other drugs aimed at minimising any adverse reactions to Ocrevus itself. With that out of the way, it was time for the main act. My particular flavour of Ocrevus is administered via a subcutaneous infusion into the abdomen, and I’m not going to lie, I wasn’t looking forward to this part too much, given how unpleasant the blood tests had turned out to be. Yet, this process was surprisingly painless, with only a slight bit of discomfort towards the end of the fifteen minute infusion period. I did start feeling a little dizzy towards the end, but that could have just been the pre-meds. Either way, with the infusion done, and the needle out, it was on to the post-procedure observation period. I did experience some very slight headache, but to be honest, I’ve had much worse. Beyond that, I actually felt pretty good and actually used the time to start typing up the notes I’m using as the basis for this blog post. After an hour, I was free to go!

I'm not gonna subject you to any pictures of the actual infusion, don't worry. I'll just use this picture from a trip to the Mercy hospital as a stand-in!

The days post procedure have been interesting, to say the least. I’ve been keeping a tally of my symptoms ever since I was diagnosed, and there’s a noticeable change in tone in the entries starting the day after I received the first dose. The ongoing fatigue that had been plaguing me for months almost completely evaporated, whilst that feeling of “brain fog” that had been a constant companion of mine for ages had similarly dissipated, at least mostly. I did have to deal with a bit of a headache for the first 24 hours after treatment, and I also experienced some slight fever for the first two days. But beyond that, things have actually improved. I’m not sure how much of that is due to the treatment and how much of it is simply due to the placebo effect doing its thing.

Because here’s the thing: Ocrevus itself does not address the symptoms of MS. Like other monoclonal antibody treatments, the drug neutralises the B cells that are attacking the myelin sheath around neurons, with the main aim being the prevention of new lesions. It does not address the lesions themselves and thus has no immediate effect on the damaged neurons. Any recovery relies on the body’s own capacity to repair damaged tissue, as well as on the ability of the human brain and nervous system to build new neural connections and bypass permanently damaged parts of the nervous system. As such, I don’t expect any major changes in the short term. The success of the treatment will only become obvious over the coming weeks.

This isn’t the end though, far from it. I’ll have to go for treatment every six months going forward, unless a permanent cure for multiple sclerosis is found. The antibodies that were injected are foreign to the body and as such, this supply will end up getting depleted over time. As such, it will have to be replenished on a regular basis. My next appointment at the infusion unit is already scheduled. I was also given a few empty blood bottles that will be used a few weeks before the next appointment to take some new blood tests here at home. Chances are I’ll also have to go back in for another MRI to check if the number of lesions has gone down, which will be the real measure of success of this treatment.

Not sure how I feel about this kind of homework - These bottles will be used for blood samples prior to my next treatment.

All in all though, I’ve been genuinely impressed by how this was handled. The HSE doesn’t have the best reputation here in Ireland, often being seen as a slow, lumbering monolith that isn’t fit for purpose. However, my recent experiences, all the way back to 2022, paint a very different picture. Diagnostic procedures were about as quick as anyone could expect from a non-critical case like mine, and once a diagnosis was made, the system really kicked into high gear, with a month and a half between diagnosis and the first treatment. I have a friend over in Canada that I talk to on a regular basis and her reaction when I told her about the type of treatment I was getting over here honestly shocked me. Getting seen within weeks or maybe a month or two, having MRIs scheduled without months or years of waiting, or having to cough up an arm and a leg to be seen quicker, not to mention a four day turnaround from scheduling an appointment to receiving my first dose, all of that seemed utterly incredible to her. 

And that’s before I even get to talking about the staff. I’ve mentioned before how the nurses, doctors, and orderlies that looked after me during my stay at the Mercy hospital were some of the warmest, kindest, and funniest people around, not to mention being exceedingly competent at their job. Well, throughout my diagnostic journey, the ambulance drivers, A&E staff, nurses, my GP, my neurologist and the numerous other admin assistants, porters, technicians, orderlies and other staff couldn’t have been more competent, helpful, funny, reassuring or humane if they’d tried. They have made this whole thing a lot less daunting!

This will be the last multiple sclerosis related post on this blog for now. I will keep blogging about my experience with the disease and its accompanying therapy, because hell, I might as well make the most of the situation, but here's the thing: I'm still me. I'm still the same nerdy, recalcitrant, rambling guy I was before my diagnosis. Things have changed, but not that much. And there's just so much other stuff to write about. So whilst I'll definitely be open about my diagnosis and therapy, I'm not about to make that my entire personality!