The final steps to diagnose and then treat MS
In previous posts I talked about the strange symptoms I was experiencing, and the process of elimination to discover what those symptoms meant. In this post I share how I was ultimately diagnosed with multiple sclerosis and the medical interventions used to treat it.
The first diagnosis - transverse myelitis
Once my lumbar puncture results were ready I saw my new neurologist, who specialised in MS. She had reviewed the MRIs from Monday, which showed multiple lesions in my spine, along with the results of the lumbar puncture from Tuesday, which showed the presence of those pesky oligoclonal bands in the cerebrospinal fluid.
It was Wednesday, less than a week since I first started on this diagnosis path. She told me I had transverse myelitis, which is when you have one episode of spinal cord inflammation with symptoms like mine – fatigue, pain, weakness, numbness and tingling. Transverse myelitis can be the first sign of multiple sclerosis, but the difference between the two is that MS progresses over time (rather than just a one-off episode), and there is demyelination in multiple areas of the central nervous system (like the spine, the brain or the optic nerve).
Since this was my first episode, and they didn’t find any lesions in my brain, we would just have to wait and see if the condition progressed.
When I reflect on how I felt during this conversation and the days that followed, I honestly can’t recall anything that would be different to anyone else who receives an awful diagnosis about their health. My initial response was that I felt a strange sense of being outside myself. I was just dumbstruck. Shocked. Confused. Then as the news started to sink in, I felt fear. I started to worry. But in a way, I felt really curious. And it was almost like I felt happy to have some kind of explanation for what I’d been going through.
The first round of treatment - steroids
The next day I was admitted to the hospital for a course of steroids to be given intravenously over the next few days. These corticosteroid drugs help reduce swelling and inflammation in the spinal cord, and they take the edge off the immune system activity. They can also potentially help to reduce the chance of a recurrence of transverse myelitis.
The steroid treatments were relatively pain-free, but the after-effects were yuck. I went through periods of energy and irritability, as if I were transforming into the Incredible Hulk, followed by periods of fatigue. I had trouble sleeping. There was a weird metallic taste in my mouth. My guts played up with bloating and some nausea.
To add to the multitude of needles, I had the blood patch procedure on Friday morning to sort out the issue with the lumbar puncture. But I was glad to have the spinal headache resolved.
The day I came home from the hospital I had a long, hot shower, put on my PJs and went to bed. My kids came home from school and sat on the bed with me for a while. My parents hovered. My husband was there for me. Gentle and quiet. Over the next few days, the rhythm of the family went back to normal. Life went on. And I was glad of it.
I felt supported and loved, but so, so alone. It was a lonely, scary time. Being in hospital had been surreal – fast and efficient – but I was on autopilot. My neurologist had said that apart from the initial course of steroids, all we could do was watch and wait. It was like holding a time bomb, not knowing if or when it was going to blow me apart.
Allowing the feels
“The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”
Over the next two weeks I stayed home and did all the things that made me feel safe and nurtured. Warm (not hot) baths. Watching rom-coms (‘Pride & Prejudice’ – both the film and BBC series - ‘Notting Hill’, ‘Under a Tuscan Sun’, you name it!). Eating comfort food. Lots of tea. Lots of chocolate. I spoke to my boss and explained what was happening and that I needed time off work. He was incredibly understanding and supportive. The next day a large, insulated box was delivered to my house - two weeks’ worth of delicious pre-prepared meals in clearly labelled containers. This practical, thoughtful gesture meant so much to me and my family.
During those few weeks, instead of trying to suppress my emotions, I tried to give myself permission to feel them fully. It was a confusing and frightening time. My physical symptoms gradually settled into a new kind of normal, but my mental and emotional journey ramped up. Now that I had time to make sense of it all, I had to find a way to continue to live my life with this news hanging over me. I wanted privacy and space to process what was going on, but I also wanted to stay connected to my people. Humming in the background of all these emotions was a sense of guilt. I knew my family were there for me, but I felt really sorry that they had to deal with this. I didn’t want to inconvenience anyone.
Did I say it was an emotional rollercoaster?
Relapsing remitting MS
I was back at work by early October 2015 but my symptoms continued to affect me. I was feeling fatigued for most of the day and experiencing new sensations - like warm water running from my knee to my ankle and spasms in my legs. My neurologist advised that these might be lingering effects of the first episode.
Her advice, again, was to simply watch and wait.
For the next 12 months my symptoms were relatively stable, but they were always there. Sometimes I wasn’t sure if what I was feeling was a new symptom from a new lesion, or a different sensation from an existing lesion. Or was I just tired/stressed/sick with a cold? I was starting to really get to know my body, learning to listen to the messages it was sending me. When I became overwhelmed by the physical sensations, which would make me feel worried, all I could do was stop, listen and rest.
When my second neuro moved away over Christmas in 2016 I was referred to my third neurologist. I instantly vibed with him and was so grateful to be his patient, given he was so well regarded in this field. He was clear and calm when he explained all of the medical details. He was caring and compassionate about my symptoms. He was just a lovely, gentle man. He sent me off for MRIs of my brain and spine, this time with gadolinium contrast, a dye that was injected into a vein in my hand. This process is used to highlight active inflammation and new lesions, helping to distinguish recent disease activity from older damage. The post-contrast MRI images would reveal any areas where the blood-brain barrier was broken, a sign of new inflammation.
In early January 2017 I had the MRI results ready for my second appointment with my favourite new neuro. He gave me sobering news. There were now a few small lesions on my brain, and new active lesions on my spine. It wasn’t transverse myelitis. It was multiple sclerosis. Most likely relapsing remitting (RRMS), where there are relapses, and your symptoms get worse, followed by recovery.
Trialling a new MS drug - Ocrevus
After speaking with my neurologist, who clearly outlined the pros and cons of disease-modifying treatments (DMTs), he suggested that I was a good candidate for a new drug that was being trialled for RRMS. I could start next week. I hesitated, but decided pretty quickly to go ahead with the treatment because I wanted to do everything I could to make sure this awful disease didn’t progress.
The trial was called OPERA and the drug was called ocrelizumab. Being a guinea pig on a drug trial felt like a community service while also potentially helping me stave off the progression of MS. All of my tests and procedures were managed by the MS team at the hospital. They organised my MRI scans, blood tests, conducted the clinical tests and the infusions. At the start of the trial I had two infusions two weeks apart, then I went through the whole process every six months for the next two years.
Ocrelizumab is a ‘humanised anti-CD20 monoclonal antibody’, which means it’s a laboratory-made protein designed to bind to the surface of B-cells which attack the body. During one of my first infusions, a nurse explained that immune cells go through a cycle of formation, growth, and controlled death (apoptosis) to maintain a healthy and functional immune system. This process is how the body responds to threats while also clearing out old or damaged cells to avoid excessive inflammation. The process also creates long-lasting memory cells to protect against future infections.
She then described it more simply. Our immune cells develop (like babies), grow and mature (like teenagers), then become old and die. This drug is clever because it targets the ‘teenager’ version of the cells – the robust and strong cells that do most of the damage. Since it’s specifically targeted, it leaves the babies and the elderly alone, allowing some immune cells to remain. But the process means I am ‘immunocompromised’ - my system would be less effective at fighting off germs, viruses, and other diseases because I wouldn’t have the full suite of immune cells.
The timing of being introduced to this MS drug was impeccable. I felt lucky and hopeful that I’d been referred to my new neuro, who was running the trial, and that I could access this drug. Ocrevus (the brand name) was approved by the Australian Therapeutic Goods Administration (TGA) in 2017 (the year I started on the trial). It was then recommended by the Pharmaceutical Benefits Advisory Committee (PBAC) and listed on the Pharmaceutical Benefits Scheme (PBS) in early 2018.
The trial was extended for another year while they tested whether they could speed up the infusion, which was taking around six hours at each appointment. (Now it only takes about four hours.) Eventually, I came off the trial and continued with the treatment, this time through the public system. I now had to organise all the appointments and tests myself, which was fine, but when you’re a trial participant, they really look after you, so I missed that concierge treatment!
I’ve been using Ocrevus now for eight years and I believe it has helped me curb the progression of this disease. I’m also certain that my practice of yoga and the lifestyle changes I made early on have been key to my recovery and long-term wellbeing.