I’ve have been receiving lots of private messages about what my first symptoms were like and what medication/treatment I’ve used so I thought it would be a great idea to get it all down. I have tried to block out the beginning of my MS journey because for me I found it quite traumatic but reflect back on it now and know that it definitely made me stronger and be able to cope with all the other shit that was to come.
I will take you back to the beginning where I first started experiencing really bad headaches which then turned into migraines and then turned into me randomly fainting. This first prompted me to go to the doctor because obviously fainting and being in tremendous pain from the migraines at only 18 was not normal. The doctors put the migraines down to the fact that I had 3 slipped discs in my spine from an accident I’d had in primary school and that I just had to get physio to help manage the pain. Soon after the tingling began in my fingers and my toes and then this turned into full-blown numbness in the whole right side of my face. I was also sleeping a lot and missing Uni classes. I have always been a studious person and hated being late or missing class so my parents knew something was just not right. After almost a whole year of doing random tests and the doctors continually saying it was just my spine causing the migraines and tingling my mum demanded a whole body MRI. This is when the lesions on my brain showed and I was then referred to a neurologist. The neurologist also couldn’t be definite that it was MS because my lesions were only in my frontal lobe which could have been caused from the migraines however 6 months later another MRI was done and new lesions had formed in my Cerebellum. My neurologist was then sure it was MS and could start treating it properly. My body by this stage had felt ravaged and I began to think I was a hypochondriac; just going bloody insane because there was no proper explanation for what I was feeling. It was actually kind of a relief to have a proper answer of why I was feeling so horrendous and know I wasn’t just going crazy. With consultation from my neurologists and the help of the beautiful MS nurse at Box Hill hospital we decided that my first course of treatment would be Betaferon injections. Back when I was diagnosed 8 years ago the only options of treatment I was given was injections as I was still mobile.
BETAFERON is an anti-inflammatory medicine that is used to help prevent MS relapses which is administered via an injection. I knew no better so I just went with the flow and thought that I would be able to deal with injecting myself 3 times a week but as I mentioned in my first blog post I couldn’t anticipate the pain of the disease or the injections. I started being able to inject myself but it didn’t take too long before the welts started to appear at my injecting sites, I began to lose room on my thighs, bum and hips so I needed to start doing it behind my arms. The pain around the injecting sites got so bad and back then no one ever told me there was such a thing as numbing cream so injecting became the bane of my existence. My mum then had to start injecting me and as a grown ass 20 year old I would sit and sob before she would inject me, partly because I knew what pain was coming and partly because I hated that I was letting this take over my life. The only reason I got through this time was because my mum is totally bad ass and whipped me into shape quick smart before I could let my emotions spiral me out of control into some deep seeded depression. My mum is super human, to see her daughter sob like a baby but put her own emotions and pain aside to pick me back up and make me strong is what I call a superhero. I will forever be indebted to her for making me so resilient and independent through the worst of life’s challenges. After 3 years of dealing with the horrible injections my neurologist realised it was just not working for me and it was causing me more stress than it was doing any good so as soon as the tablet Gilenya (fingolimod) came out he put me on it.
GILENYA seemed amazing to me purely because I didn’t have to inject myself anymore! I ignored the risks and possible side effects and signed up to it immediately, I even organised a bin fire which consisted of me and a bin outside BURNING my injecting bag and the stupid injector that ruined my life for 3 years – it felt sahhhhhhh good!!!! With Gilenya because of the side effects, you had to take your first tablet in hospital and be monitored for the day to make sure your heart rate stayed stable. All my obs were good so I was checked out of the day ward and onto enjoy life with only a tablet to pop every day. I was doing fine but that was until my hair started falling out in chunks, the extreme muscle pain kicked in and my white blood cells had dropped so low I was sick for a good 6 months straight. I experienced every possible side effect of this drug to the point where I was even admitted to hospital with a suspected clot in my lung because of the shortness in breath, my skin turned all kinds of pale and yellow and my blood pressure was all over the place. But because I was so traumatised from the injections this was nothing in comparison so when my neurologist suggested we try different injections or try push through on Gilenya I chose to push through. After 6 months I noticed my hair stopped falling out in chunks and the side effects began to subside as my body got used to Gilenya. I have now been on Gilenya for 5 years and for a good 3 years it served me well. In the past 2 years I have been having too many relapses too close to each other so we have had to discuss new treatments. This is difficult obviously, because it is always hard changing and experiencing new side effects and worrying about the unknown.
Since February I am relapsing again and this time it’s affecting my right eye as well as my left leg. I am going on a much anticipated European trip in July and I didn’t want to do any new treatment until I got back. However not everything goes to plan so we had to re-visit treatment options all of which I declined. Tysabri was on the table and I have heard amazing things about it however, I was told because I am high positive for the PML virus I need to be closely monitored for signs of the virus. That will be a little hard while I’m in the middle of the Adriatic Sea. I kind of don’t want to get a severe brain infection and die or be severely disabled so I chose against Tysabri for now. My other option was Lemtrada.
LEMTRADA basically kills certain immune cells in your body that are thought to cause relapsing MS and then after the treatment your immune system begins to replace the removed cells with new cells. You receive 5 infusions over 5 days and then 1 year later you receive another 3 infusions. I have been stepped through the side effects which are really bloody terrifying. My neuro didn’t feel comfortable wiping my immune system and then me going overseas so we also decided against this for now.
My other option was to do another round of steroids to keep me going until I get back however I got a really bad sinus infection and inflamed ear drum and had to re-schedule. Then when I was due to go again my ear hadn’t healed and needed more antibiotics so we took this option off the table as it was just going to be a Band-Aid solution anyway, which could have made me worse as my immune system may have not dealt with it.
The final option was cancel the trip and start Lemtrada! LOL that was the biggest joke of the century. My husband and I have worked too damn hard for this trip and there has to come a point where you live and experience life and don’t let your health get in the way. Yes, I know I will risk irreversible damage and yes, health should always come first but I know cancelling this trip and doing Lemtrada which has sooooooo many worse side effects, would have way more of a negative impact on my emotional and mental health than me going on this trip, relaxing and making amazing memories…MS can wait!!!! I will continue to take Gilenya until I come back and then we will re-visit treatment options. I will keep everyone posted on what I choose and how it goes.
I hope this has helped shed some light onto the various treatments out there for MS but please also remember that everyone is different, reacts differently and there are many more treatment options available for MS that I haven’t mentioned because these are only the ones I have been exposed to. Thanks so much for reading!
Until next time…Keep smiling xoxox