I’ve officially had MS for 7 years, but I actually had my first symptom in 2005 when I was 24. Over the period of a few days my vision in my right eye deteriorated rapidly. It was terrifying and I thought I had a brain tumour. I saw an eye specialist who requested an MRI and referred me to a neurologist. The neurologist immediately booked me in to hospital before I’d even met him. I remember feeling so scared and confused! My MRI showed 1 lesion on the optic nerve. I had a lumbar puncture which was all clear and the neurologist put me onto 5 days of Solumedrol. My vision improved rapidly (and has luckily since returned to normal). As there was only one lesion at this point, my neurologist said it might be the first symptom of MS but might also be nothing. He told me I should be on the lookout for tingling, pins and needles etc but not to worry about it.
Easier said than done! I spent the next few months frantically googling MS and optic neuritis. The stats didn’t look good. A large percentage of individuals who present with optic neuritis go on to be diagnosed with MS. In addition, I was female, in my early twenties and of Dutch descent. I ticked all the boxes of someone typically diagnosed with MS. My anxiety around an MS diagnosis was overwhelming. The more I read, the worse it sounded. All I could think about was being disabled, in a wheelchair and losing my independence. Every tingle or twitch I experienced was analysed to the nth degree and caused sleepless nights!
But after some time, I started to worry less. I figured I was out of the woods when more than 5 years had passed without incident.
Then, in 2012 my sister was diagnosed with MS. I was devastated. All the fears I had for my own life, I now had for her. After 2 concerning symptoms I remember her telling me she was relieved to have a diagnosis, and one that was not a death sentence. She was incredibly brave and optimistic about the future. After her diagnosis, I felt strongly then that I had must have MS too - having previously had such a common MS symptom (optic neuritis) and now also direct being directly related to someone with MS, it seemed my fate was sealed.
6 months later, I experienced a strange shock sensation down my legs whenever I bent my neck. It was a symptom my sister had had too - Lhermitte’s. It was around Christmas, so I saw the only neurologist who was working at the time. After my MRI she said my results were “strongly suggestive of MS” but she wanted to do a lumbar puncture to confirm. Being terrified of needles, I wanted to avoid another lumbar puncture so instead chose to wait and see my neurologist from 2005. I had to wait 2 months to see him! The wait was awful but deep down I had already accepted the obvious. As soon as he looked at my MRI, he told me I had MS. Even though I expected it, I couldn’t hold back the tears when he confirmed what I had feared for so long. I had recently become engaged and I remember him telling my fiancé who was sitting next to me, that I would live an “almost normal life” and that if I’d been diagnosed 20 years prior, it would’ve been a very different story. I immediately asked him if I would be able to have children and he said yes, much to my relief. He did stress the importance of starting treatment as soon as possible and prescribed Rebif. Unfortunately, my medical aid refused to cover treatment as apparently, I had not met all criteria - perhaps because my 2 symptoms were 8 years apart. Despite lodging a complaint with the Council for Medical Schemes I could not get the medication approved. Over a year later when I got married and joined my husband’s medical aid, Rebif was finally approved. My neurologist advised us to wait with starting a family and not delay treatment any further.
As mentioned previously, I have a phobia when it comes to needles. It took a huge amount of strength to learn to inject myself. I was blessed to have the lovely Sr Myra to help me along, and my husband was also a great help with injecting when I was not up for it, and holding my hand while I learned to do it myself. The side effects were rough and impacted my life a lot. I often had headaches, fatigue, flu symptoms and aching muscles. At the same time, my sister had been prescribed Avonex and was adjusting to her diagnosis. It really was a blessing that we had each other to talk to and go through this tough time together. Although our symptoms were not the same, we saw different neurologists, and were on different medication – we still had many of the same fears and struggles. My sister however had already had her children and I was desperate to fall pregnant. Luckily, less than 2 years after starting Rebif, my doctor was happy with my condition and gave me the go-ahead to stop treatment.
I had really hoped to fall pregnant quickly so that my time off treatment was minimal. Sadly, this was not the case. My husband and I embarked on a painful journey of infertility. It was an incredibly difficult time for both of us. We also emigrated to the UK during this time and less than 18 months later ended up moving back to South Africa (partly because I did not qualify for IVF in the UK and we could not afford it privately there).
After 3 years and 6 IVF’s I was unable to conceive. In 2017 I had a bad relapse and decided to start my MS treatment again and close the door on having children. It was an extremely tough decision. I was physically and emotionally broken, and angry that I had this to deal with on top of MS. My life was so different to the life I had planned. It took plenty of therapy, medication, and support to get me through a dark depression, but I did. I got through it.
I went back onto Rebif then (and after all those IVF’s had finally gotten used to needles!). After a year I had relapse and changed over to Aubagio. Despite struggling with nausea and hair loss, I was happy with the change. Unfortunately, not even a year after starting Aubagio I again relapsed, and my MRI showed disease progression. The obvious next step was Gilenya (Tuvigin) however I had very real concerns about PML and some of the other side effects. My neurologist said we could try Copaxone as a last 1st tier option. Although it is statistically less effective than many of the newer drugs, it does work very well for some people. He gave me some time to make this decision and after doing a lot of research I eventually settled on trying Copaxone. I have been on it for a year and am due for my annual MRI soon. I’m really hoping that all will be looking good so that I don’t need to change medication again!
Over the years I have managed to remain relatively healthy. I struggle with bladder issues and am on medication for this. I also suffer from the “MS hug” and burning pain in my feet almost daily, both of which I treat with cannabis products which have worked well for me. Occasionally I have some cognitive issues, and sensory symptoms like hot/cold sensations or pins and needles. Fatigue comes and goes, but I am very fortunate to work for myself so I can usually schedule my work around this. Having said that, my greatest challenge is knowing when to “take it easy” and listen to my body. Mentally I always want to do more but my body does not always allow for it which is frustrating.
People are often surprised when I tell them I have MS. Because like me, they expected a person with MS to be in a wheelchair or look disabled. I am so grateful that I can still walk and talk normally, and don’t’ look obviously ill. The downside of “looking well” is that people don’t really understand that I battle with MS every day and don’t realise how debilitating the invisible symptoms can be. Nevertheless, I am optimistic that better treatments for MS will continue to become available and that the future is bright.