MS: Busting the Myths
December 20, 2021 | Life with MS, MS Voice, Newsletter, Research, Treatments
My name is Celia Attwood, I’m 32 years old and a mum of 2 beautiful boys. I had been to see my G.P numerous times over the years before being diagnosed with MS but with no definite answers and symptoms always going away I had just got on with life. But I knew something was definitely more ‘off’ than usual in August 2017 when I started to experience constant tingling in my hands and feet so started the journey to get a diagnosis. After a month without it going away I was finally referred to a neurologist and then after another months wait to see him I had developed another symptom called the L’hermettes sign which is a pretty tell tale sign of MS. He referred me for an MRI which after another month or so wait and then Christmas holidays I was finally diagnosed with RRMS (Relapsing Remitting Multiple Sclerosis) in January 2018 but can look back about 6years prior to that having unexplained symptoms on and off.
I knew nothing about MS and so I was pretty shocked to now have it and I assumed I could just get some medication and I would be fine, my neuro told me not to google it but I didn’t listen so as you can imagine I was pretty overwhelmed and then to add to that initially I was told that I didn’t qualify for medication yet so that left me feeling even worse and scared for my future. For about 2 weeks I stayed in bed and cried and then my partner told me in the nicest way possible that that was enough feeling sorry for myself it was time to live and enjoy life. My son was 2 at the time so he had no idea what was going on which helped me to smile on those hard days. I believe everything happens for a reason and I remembered reading an article in a magazine, just before I got diagnosed, about a girl with MS who went to America for HSCT so I started researching and found a group on Facebook.
It looked like my options were either to go to Russia or Mexico to have it done. I was worried about bringing it up to my parents as I thought they would think I’d lost the plot wanting to go overseas to wipe out my immune system with an ‘experimental treatment’ but I’m so lucky they just said whatever you want to do we will support you. I managed to contact a few people who had had treatment already and I really felt a good vibe coming from Russia, and I liked the idea of being an inpatient in a hospital incase anything went wrong so I applied and within a month of diagnosis I had a date to have HSCT on the of 26th November that year!
The 10 month wait was tedious, I ended up relapsing and that made it hard to walk for a week which was terrifying but also made me more confident in my decision. I was offered tysabri but my heart was set on HSCT by that point. The MS nurse I spoke to about HSCT was not very supportive which was expected but a bit disappointing and my neuro was cautious but interested to see how I went. The hardest part of going to Russia was leaving my nearly 3 year old and my partner and knowing there was a tiny (less than 1%) chance I wouldn’t be coming home. I was away for 34 long days and missed my sons birthday and Christmas which was really hard. Once again I was SO lucky – my parents came with me and also they were able to pay for my treatment so that took a huge weight off my shoulders and I’m forever grateful to them for giving me the best chance at a ‘normal’ life.
My MRI in Russia showed a lesion nearly blocking about 90% of my spinal cord and Dr Fedorenko was surprised I wasn’t in a wheelchair so I know I was there at the right time. I was allowed out and about for the first week so did some sight seeing which was pretty special as I never imagined I’d ever go somewhere like Russia. It really is magical at Christmas time! HSCT was definitely not a walk in the park but I handled chemo pretty well and apart from gaining a huge amount of weight from the steriods making me so hungry I didn’t have any major side effects.
On the 12th of December I received my stem cells back and that was a life changing experience, but also probably one of the most uncomfortable (although quick) for me. It was a strange sensation like a weight crushing my chest and a strong taste of tomato paste but left me feeling absolutely buzzing. In Russia they call it your stem cell birthday – the start of our ‘new life’ and all of us that had them back that day had a party afterwards was such a good vibe.
I met some amazing people there that will be lifelong friends. After that I was put into isolation for about 11 days while my immune system was next to nothing. It’s a very crucial part of treatment to avoid infection. It was hard not being able to see anyone and definitely an experience not being allowed to shower or brush my teeth – only wipe myself down with vodka – very russian haha. I did struggle with loosing my hair but had fun with wigs and hats when I got home. The staff over there were amazing and I didn’t have much trouble with language barriers and I felt safe and secure.
I just think its such a shame HSCT is not an option in NZ especially considering they already do it here for cancer. Its not a new treatment, They have been doing it for autoimmune diseases overseas for 20 years and the studies have such promising results ! To have to leave your family and go overseas is just so hard and risky flying home with lowered immunity and especially now with covid it’s even harder I just can’t even imagine and also having to come up with the funds makes it near impossible for a lot of people and just not fair having to battle with MS and try and fundraise.
I froze embryos before I went as chemo can affect your fertility, but I was lucky enough to get pregnant naturally last year and had my second son this year January 2021. I had an MRI in June and my MS is stable which was the best news as I’m coming up to my 3 year stem cell birthday. For the most part I feel good! Amazingly my fatigue has improved dramatically since treatment which is a bonus.
HSCT is not a magic cure the aim is to halt your MS where it is and not get any worse so I still get a lot of my usual symptoms at times mainly if I’m tired or sick etc, but I count my blessings every day that I had the opportunity to have this treatment and I really hope it becomes available in NZ.
Please take a moment to sign this petition to make aHSCT available in New Zealand, for MS patients.
Thank you.
