Posted by: The Sumaira Foundation in MOG, Patient.e, Voices of NMO
It was September 2018, and I was off on maternity leave after having my second daughter earlier that year. As nice as that should have been, I was probably at one of the lowest points in my life. I’d been diagnosed with post-natal depression a few months earlier. In all honesty, I was a mess, mentally, emotionally, and in some ways, physically. I started to notice my right-hand shaking; I put it down to the stress and anxiety that I was experiencing.
As time passed, it gradually started to get worse and had noticeable effects on my daily life. I was dropping and spilling things and throwing baby formula around the kitchen like it was confetti! At this point, it had become a bit of a nuisance, so I booked an appointment with my general practitioner (GP). After some basic tests, the GP agreed that this didn’t seem like anxiety and referred me for an MRI scan of the head & neck. The MRI appointment came through pretty quick. Before I knew it, I was receiving a phone call from the doctors to arrange to go in to discuss my results. Straight away, you know something isn’t right if they want to see you face to face! They won’t give you bad news over the phone! So, I visited my GP, who told me that my MRI showed signs of demyelination on my spinal cord. Although it could be early signs of multiple sclerosis (MS), it could be completely unrelated. He would send a referral to a neurologist. If they felt it was of significance, they would write to arrange an appointment.
It sounds crazy, but I always knew I’d be having a conversation like this at some point in my life; let’s say it was a hunch after my mum’s diagnosis of MS 20 years ago. Back then, MS was much less known than our understanding of it now. Over the years, I’d done lots of research, so I was able to support her through any future relapses. By the age of 10, I was taking myself to and from school, sorting my own meals, and helping with the chores when the fatigue took over her!
Science says MS is not hereditary. However, research suggests that if a family member has an autoimmune disease, it increases the likelihood of you and future generations ending up with one. So, when a lovely letter arrived with details on how to book an appointment with the MS team in Walton, it came as no surprise, and neither was the 18-week waiting list for said appointment. By this point, you do start to wonder if it’s ‘nothing’ after all. Luckily, I had private medical insurance through my employer, so I managed to get an appointment with the same neurologist just a few weeks later. Turns out there was no need for worrying. The neurologist didn’t think it was anything serious; since the tremor had subsided on its own by the time, I saw him, which was a positive sign. So with that, I was sent on my way to continue life as if nothing had happened.
Time flew, and before I knew it, it was December, and we all know how manic December is during the run-up to Christmas. A week before Christmas, I started noticing a flash across my left eye like you get after you’ve looked at a bright light. Over the next week, it gradually got worse.
I managed to get an appointment with my GP, who phoned straight through to the hospital to see if there was any way I could get seen by the ophthalmologist that day. After three hours of waiting in the hospital, I was finally seen by the ‘eye doctor’ who gave me a Christmas gift I’d never forget, Optic Neuritis, with an extra special message that it would get worse before it got better. There was no explanation, no “it will clear in a few days,” nothing. The eye doctor was, of course, right, and it did get worse, to the point I could see nothing but darkness; I admitted defeat.
A month later, I visited the neurologist again, the same one who told me not to worry just a few months earlier. This time they prescribed a high dose of steroids to reduce the inflammation in my left eye. Thankfully these worked, and I gradually regained my sight. While recovering from optic neuritis, I visited the specialist MS Team, who took some blood samples to send off; at the time, I didn’t have a clue what these tests were, nor did I ask.
In July, I attended my first appointment with the NMO Team, and my mum came along with me. We laughed about how the tables had turned. She was now coming to my appointments rather than me supporting her for a change! We spent a full day at the hospital meeting with a whole host of people, including doctors, nurses, dieticians, occupational health therapists, and a counselor. I was formally diagnosed with NMOSD (mog positive). The message they gave was a positive one. I hadn’t relapsed since my optic neuritis attack, and that MOG seemed to be less debilitating, meaning better patient outcomes over its sister antibody, AQP4.
Fast forward to 2020, I received an unexpected phone call, one which changed my outlook in so many ways. My NMO Team told me that since my tests kept coming back positive for MOG over the past 18 months, I should start on some medication to prevent further attacks. I was so confused; I’d been under the impression everything was under control. Medication had never been mentioned before. Now of all times, during a covid pandemic, they wanted to use medication to suppress my immune system? The alternative was, don’t start medication, effectively wait and see what happens. It might do nothing. It might attack the same place, maybe even somewhere new. While I usually love a good surprise, another ‘MOG’ surprise wasn’t something I wanted. I had residual damage to my spinal cord and optic nerves from the attacks leaving me with migraines, bowel and bladder issues, hearing problems, and chronic fatigue. So you can see my dilemma.
Making the right decision was difficult. When weighing everything up, I remember thinking, how can I look after two kids, a cat, and a dog, and keep on top of the house? Would we have to give up our daily walks? They were the only thing keeping us sane most days. What if I didn’t start them and had another attack that took my sight? What if I never saw my children grow up because I didn’t try what the specialist recommended?
After consideration, I decided to give the medication a try. I realised at this point that I had to prioritise my health.
I was lucky; I had my mum’s support and understanding because of her own experience with MS, but I still felt alone. No one had heard of NMOSD and even less about the MOG variant. Awareness in the UK was limited. There were no support groups or UK organisations to turn to. I started searching for others who had gone through what I was experiencing. I didn’t realise that there is a global community out there for people diagnosed with NMOSD. Each individual showed incredible positivity throughout their ups and downs with this disease.
2020 was the change I needed, that kick up the bum, which made me accept that I have a rare, life-long condition. It gave me the time and ability to re-adjust and adapt, a chance to become the strong, resilient, and independent single mother I am now. I’m privileged to have had the support of my mother throughout my life and diagnosis. Watching her deal with everything life threw at her, and doing it with a smile, gave me the ability to do the same! Sadly, my mother passed away last year at the young age of 51, but her legacy lives on within me.
Yes, the last few years have been difficult, but I wouldn’t change any of it. It’s given me a greater appreciation of life and a passion for helping others.
My hopes for the future are to make sure that nobody else goes through this alone. And that patients and caregivers have access to the most up-to-date and relevant information and access to support, guidance, and all available treatments.
Our stories prove that no matter what, you can and will get through anything you are dealt with in life; you just have to have a little self-belief.
