My name's Doris Merino. I've been living in Belgium for 21 years now. My symptoms, the disease, started three years ago.

It was in June 2021. It started off with a feeling of pain in my legs. At the beginning, I didn't know what it was.

I tried to get a diagnosis, more or less seven months went by, from June to January 2022, before I finally got the result.

But during the entire path to diagnosis, as it was during Covid, it was complicated to get an appointment. I went to see several doctors, because I didn't know what I had, because I felt this pain in my legs, a tingling sensation, and I couldn't walk as quickly.

I went to see a rheumatologist, a blood circulation specialist. And then I had an MRI scan of the marrow, the spine, the bone marrow, the brain. At which point, my GP called me to say I needed to consult a neurologist.

And that's when I started having all the tests, the treatment pathway, but that was also a long process because it was hard to get appointments.

Around October, I underwent a lumbar puncture, but I had to wait until December to get the result; no actually, it should have been in November, but the appointment was cancelled, so it was only in December.

In December, the neurologist told me that I needed to see a specialist. I asked what was wrong with me, what the diagnosis was, but they didn't want to tell me.

They told me to go and see a specialist and, in December, I got an appointment at Erasme hospital. It was only then that they told me a bit more, without giving me the actual diagnosis. But the symptoms I had at the beginning, the pain in the legs, that went away.

Only the tingling remained. Tingling right down my left side, my arm, my leg. Then there were all the digestive problems, the urinary problems, because the disease damaged all my systems.

From around the end of December I once again started to feel what I think was the disease flaring up again. The pain returned.

It started with pain in my neck. I remember it was around the first week in January and the pain wouldn't go away. Even taking the medication didn't help. The pain only got worse. So, I went to the emergency room at Erasme and that's when I was told I had to be hospitalised.

It was after being admitted that I was given the diagnosis and told that I had neuromyelitis optica. That kind of diagnosis is life-shattering. It's tough. Everything changes.

That being said, luckily, I was given a lot of psychological support. That helped me a lot. But, since then, I've had another relapse. It was back in March then, in April, another attack. But it started...

I started having physiotherapy.

When I went to see the physiotherapist, I remember, I walked. It took around a minute for me to stand up, I stayed upright, but I couldn't move my legs. And that really scared me. I had another appointment with the neurologist, who prescribed MRI scans.

But in the meantime, I had a relapse. In March, with this new relapse, I was admitted to hospital again. At that point, it was even worse. It was still my left side, but the pain was worse, I couldn't walk.

I remember, I was hospitalised for almost a month. But the timing wasn't great, as the attack came around the Easter holidays, I think.

The hospital was understaffed in doctors. It meant that it took some time to establish a treatment plan because they had told me that it could  be something other than neuromyelitis, that maybe it was a tumour. That made it even more difficult to accept. But then they gave me a series of tests, I underwent a lot of tests and the symptoms started to disappear.

It was at that point that they told me that it wasn't a tumour, that it was neuromyelitis. Because if it had been a tumour, the symptoms would worsen gradually and, at that point, they were starting to let up.

But then, when they flared up for the third time, I spent a few weeks in a wheelchair. Then I had to use crutches before switching to a walking stick.

I still do physiotherapy and that's why I can walk now. I can walk properly, but the symptoms leave after-effects each time. The after-effect I suffer from most now is pain. When I walk too much, the pain starts in my hip, then spreads to my knee, the sole of my foot. Then you have all the difficulties with the urinary system, the digestive system, that stays.

But you have to keep going and you can't let it get you down. When the pain lets up, the disease leaves you exhausted because it is very debilitating...It's not the like the fatigue that a normal person feels. It knocks you out.

I admit that it was difficult at  first, but now I've been living with the disease for three years.

I've got a bit used to it,  have adapted to it. What I did when I got the diagnosis, in 2022, I told myself: I could no longer work the way I worked before. I'm a really active person, so I asked myself: What do I do and that's when I started going on training courses.

It helped me a lot because it means you're not always stuck at home constantly thinking about the disease. I think that's a good thing, to have projects and live your life to the full. And that's something that helped me a lot.

I understand that, for people who have the disease, who are diagnosed with it, it's not easy at the beginning. You need psychological support. You have to tell yourself: ok, this is happening, but it can be treated. There are treatments to slow down the disease.

That was indispensable because, at the beginning, with the symptoms and everything I went through, it's difficult. But my sister, my brother-in-law, my cousins, they were always there for me.

My sister, mainly, she would come over and help me. My brother-in-law would do my shopping for me. I was surrounded by my family, with all the support from my family.

I hope that, in the future, they will be able to find a cure, but at least there is a treatment that slows down the disease. It's working so far, because I haven't had a relapse since 2022.

I hope that it will last, that it will work and I can continue as I am now. I haven't had a relapse since, but I just hope that I can continue to feel ok for as long as possible, to walk correctly. 

I don't think about the disease. I know I have a disease, but I push it to the back of my mind. It's not going to control my life.

You have to look forward, keep going. That's what I find is important. You have to keep going.

The symptoms can be complicated, it's hard at the beginning, but then, you get used to it, because I still get the tingling sensation down my left side but, sometimes, I forget about it. When I think about it, I tell myself: there it goes, it's there. But then again you have to adapt.

You have to avoid thinking about the disease. Life is good. Life is good and you have to look forward.