Sci&Tech Writer Youssra Al Hajji met UoB graduate Sameerah to discuss her journey, from her recent diagnosis with MS to taking part in MS Walk Birmingham this June

Written by Youssra Al Hajji

What led to your diagnosis of multiple sclerosis (MS)?

In December 2021, I was at the end of my first year of a Masters course when I started having difficulty with my vision in my left eye. It started off as I couldn’t see red or green as much, then it became quite painful to move my eye. I had a bad headache on the left side of my head and within 24 hours I was completely blind in that eye and could only see bright painful light. It all happened quite suddenly over two days, and I had no idea what was going on. I looked it up and thought it was optic neuritis. I didn’t think of MS. 

I had an appointment with the opticians and they said it was a migraine, but I’d had migraines before and it was nothing like this. I then went to see an optometrist who alerted Birmingham Midlands Eye Centre (BMEC) of my case. I went into BMEC the following day and I was seen by a junior doctor, who got his consultant to come and have a look. The consultant had a look at my eye and they said that they were worried about MS, and they needed to admit me. I was lucky that on that day there was a neuro-ophthalmologist consultant there. She had a chat with me, assessed my symptoms and explained I needed to have an MRI scan to see what treatment they would give me. The MRI showed I had an active lesion on the front right part of my brain. They also did a blood test to check for markers that are associated with more progressive disorders. Once everything was done, they started high dose steroids. I chatted to the consultant who said the scan of my brain had older lesions that were not active but looked like MS lesions, but at this point she was not able to say whether this was MS or not. I was discharged from hospital without a diagnosis and referred to the neurology team.

The MRI showed I had an active lesion on the front right part of my brain

I had a couple of consultations with an MS specialist and a repeat MRI scan at the beginning of 2023. I did not match the criteria to be diagnosed with MS initially, and I was diagnosed with a clinically isolated syndrome which is not MS. In 2023, I had another MRI. There was a new lesion there. After a multidisciplinary team meeting in June 2023, I was finally diagnosed with MS.

How did you handle your diagnosis?

Because there were big gaps between my hospital appointments and scans I had time to talk myself out of having MS, so I was not expecting to be diagnosed with MS. I thought ‘this would not happen to me’ and I also did not have day-to-day symptoms. When I did have consultations with the neurologist she said it sounds like MS, but that felt like just a passing comment. I was asymptomatic, so it was not something that was being seriously considered at the time. When I got the letter confirming I have been diagnosed with MS, it really shocked me. I was holding out hope that it was not MS. A lot of what I learnt about MS is that it knocks you mentally and physically, and that is it a progressive disease. I always had this negative image of what life with MS would be like, so when I received the diagnosis, I expected life to go downhill for me.

Initially I was angry and did not want to talk to anyone about it. Every time I received an appointment letter, I did not want to go to hospital, I did not want to have the blood tests and scans. I had also just started a job so I was worried about work and whether I would be able to have my MS treatment and still go to work, as I did not want to be in a situation where I was seeing sick patients but I am also immunocompromised, due to the medication. I also had a negative opinion about immunosuppressive medication so I was worried about travelling where there is a lot of potential to be exposed to various diseases. I did go through a period of time where I did not want to take care of myself – I didn’t exercise, eat well or socialise. I think after about three months I told a couple of friends and work as I was starting to discuss meds with my doctor, and they were really supportive. 

What medications or therapies have been most helpful to you in managing your symptoms?

I was offered infusions and injections at home. It is a six-monthly infusion and so far it has been really good. Once I had the infusion I did feel like I had a lot more energy, and they did another scan and they have not found any new lesions since. I am doing better now mentally and therapy has helped with this. I have been struggling with anxiety which is new for me, but generally I do feel I am doing a lot better since starting the infusions. 

What is your main motivation to do the MS Walk in June 2024?

I have only recently felt like I am able to speak about MS a bit more which is why I decided to do this walk. It’s been really nice to see I do have support from people which is amazing, and I am hoping that I will meet other people going through the same thing on the walk. I have started an Instagram page to raise awareness about MS and how it can impact one’s life.

It’s been really nice to see I do have support from people

Being young with a chronic illness can be difficult, but MS is actually something that mainly affects young women in their 20s, so it is important to raise awareness. Although it can affect people severely, it doesn’t affect everyone to an extent where they cannot function, which is the impression a lot of people seem to have. 

What is something you’d like people to know about MS, considering many are still unaware of what it is and how it may affect those with it?

For me, I would say it would be nice if people understood MS is not a binary condition and there is a broad spectrum of symptoms of MS. There are people who have not had relapses for ten years, are asymptomatic and not on medications. On the other end of the spectrum some people cannot walk and need help day-to-day, and at any time someone’s symptoms can change. One day you can be functioning well and the next day is a really bad day. 

What I didn’t like was people acting like I am dying when I told them about my diagnosis, which I found overwhelming. People were reacting to my MS diagnosis in a way they might react to someone with terminal cancer. People made me feel like I would not get over this, like my life is ending. I had people telling me to get a different job and start taking life easy. Obviously life does change after diagnosis, and there are certain adjustments someone with MS may need to make, but it’s important people remember that it is a spectrum, and it is possible to continue doing the things I normally do even with my diagnosis.

What advice would you give to someone that has recently been diagnosed with MS?

I think for me I didn’t talk to anyone about it really, I pretended that nothing was going on. I would say it’s okay to speak to someone about it and it is okay to be vulnerable with people in the moment. I didn’t do this so when I got the diagnosis, I didn’t tell anyone for a long time and when I eventually did tell people, it took more of a toll on me. When I eventually told people, I was very worried about their reactions. People aren’t going to judge and they’re not going to think any differently of you. I was worried people would start seeing me as this delicate flower, but it wasn’t as I thought it might be. People were checking on me more often which I actually liked as I knew people were there to support me. I would advise those with a new diagnosis of MS to talk to people sooner, and to remember that it is never too late to reach out for support from friends or family.

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