Advocating for my MS treatment
Tobias was diagnosed with MS in 2020. In this post, he talks about his experiences with DMTs and learning to advocate for himself.
I was diagnosed with relapsing remitting MS in 2020. I‘d known for quite some time that something wasn’t right. At university, I studied neuropsychology, so I learned about MS, and had a hunch.
Shortly after the first lockdown, I was taken to hospital because my appendix burst. It was treated and everything was fine. When the doctor came to me, he said, “You must have been in real pain.” But I had no pain at all.
Two months and a lot of MRIs later, I was diagnosed with MS.
My treatment has been interesting. I started on Avonex because I wasn’t scared of injecting myself. I liked it, because it was once a week. If I had to take pills every day, I’d likely forget one.
Starting treatment for my MS
But the side effects were absolutely horrible. At the time, I thought it was part of the deal. But a year later I met with my MS nurse, and she said that they weren’t what they’d consider normal. We had a chat about other treatment options. My neurologist said there were many schools of thought on how best to treat MS. One of them is to start with more mild treatments, and another is to treat more aggressively from early on. After I did my own research, I thought that intensive treatment would be best.
But my neurologist said he didn’t believe in aggressive DMTs. So he offered me Aubagio. I got on well with it, but my disability deteriorated, so I started back on Avonex.
I developed really strong tremors, to the point that eating and drinking without help isn’t possible. And I can’t dress myself unless it’s with a zip.
Advocating for myself
An MRI showed more lesions in my spine, and my neurologist said to keep waiting. But I said no – the time for waiting is over.
I asked for a stronger DMT. So my neurologist gave me three options. I used the information on the MS Society website to make my choice, and decided to go for Kesimpta. I’ve been taking that for a year now and it’s working well. It doesn’t improve my disabilities, but it’s working to stop further progression. It’s easy and quick to receive – I have an injection every four weeks.
I learned early in the process that advocating for yourself is important. After being diagnosed, I went to meetings at Revive MS Support. One of the first things a nurse told me was that self-advocating doesn’t make you a difficult person.
I don’t find it hard to do, but I think it took my neurologist and MS team some time to realise that I knew what I was talking about. At one point, I involved my local member of Scottish Parliament (MSP). After he intervened, it was easier to make myself be heard.
I don’t hold back when it comes to talking about MS. My family is open and my colleagues are too. If they have questions about MS, they can ask me. And if not, I will tell them anyway!
Talking about MS
I’m part of a few MS groups on Facebook, so sometimes I talk about my experiences. I tell them to ask questions, but to always, always look after themselves first. If they feel something isn’t right, then it’s not right.
MS and me
I'm factual about my needs when it comes to MS. Yes, I need a walking stick. If I don’t have it, I can’t walk. I have a walker and a wheelchair that I use from time to time, and I don’t have a problem with them. They’re tools that I use because I have MS.
Saying that, I will never “accept” MS. I live with it as well as I can, but I will fight it as long as possible, as much as possible and as hard as possible. I want to fight MS because if I don’t, then it will fight me.
