Multiple Sclerosis – One person’s journey
World May 30 is World Multiple Sclerosis Day. Below is the journey and experience of a friend of mine that I went through secondary school with. Anna talks about how it has impacted her, how she manages it and the treatment she is receiving to hopefully repair some of the damage that is occuring.
What does this picture look like to you? Someone who had a big night out the night before? Someone with an allergic reaction? Someone with Bell’s Palsy? No. This is a picture of someone with Multiple Sclerosis – MS – having a relapse. This is a picture of me.
I was 36 in July 2014, and the mother of an 8-month-old daughter. I didn’t even see myself in the mirror the morning of our appointment with the Maternal and Child Health (MCH) nurse. Those of you who have had small children will remember that even grabbing a quick glance of yourself in the mirror before leaving the house doesn’t happen very much! I simply didn’t see what I looked like that morning in July 2014…
After my super MCH nurse identified that something was wrong, I went to a series of doctors in quick succession, and ended up in the Neurology ward at the Austin Hospital about 10 days later, receiving intravenous steroids to clear up the relapse – which had not only affected my vision and my facial muscles, but also my ambulation and balance.
What is MS?
Multiple Sclerosis is an autoimmune disease that affects the brain and central nervous system (CNS). The brain and CNS is made up of billions of nerve fibres – called neurons. Think of a neuron as a piece of electrical cable – copper wires on the inside, covered with a plastic coating. The copper wire is an analogy for the nerve itself, where all the electrical impulses from around the body travel, telling the body what to do, how to react etc. The plastic coating is an analogy for the muscular coating of the nerve fibre – called the myelin sheath. The myelin sheath protects the nerve, allowing the electrical impulses to accurately deliver the messages around the body from the brain.
In Multiple Sclerosis, certain immune cells (a group of white blood cells called B cells) don’t behave as they’re meant to. In the case of MS, it’s thought that they’re triggered by an unknown agent (likely the virus that causes glandular fever) to start misbehaving and nibble away at the myelin sheath covering the nerve fibres. When this happens, it’s called a ‘lesion’.
A human nerve fibre damaged because of MS functions not unlike an electrical cable where some of the rubber coating has fallen off – and you can see the copper wires inside the cable.
Today, people with Multiple Sclerpsis are diagnosed via an MRI. Upon diagnosis, most people have two or three lesions identified in their first MRI. I had more than 20 – which, to me, instantly meant that I had had Multiple Sclerosis bubbling away for a long time. Probably since I had glandular fever in 1996.
**** DON’T GET SCARED IF YOU HAVE HAD GLANDULAR FEVER**** It’s a really common infection, and MS is thought to develop in conjunction with a glandular fever infection and other factors – including genetics and environmental factors such as Vitamin D exposure.
Symptoms I had upon diagnosis included optic neuritis (an inflammation in my left eye), a droopy right face, an inability to see certain colours, and an inability to perform tandem gait (what we called ‘fairy steps’ as kids – walking one foot immediately in front of the other). My visual problems resolved pretty easily but my balance isn’t fantastic and I am still unable to perform tandem gait – I call it my ‘party trick’.
Massage therapy, movement and Multiple Sclerosis
About once a month, I get a session of musculoskeletal massage therapy – I see it as a ‘grease and oil change’ to keep my dysfunctional body moving as best it can. And it’s hard on my old bod! My therapist often advises me to have a couple of nurofen before visiting her as she works me hard. But the sessions do work! I come out of them with an improved gait, for starters.
I also see a physiotherapist weekly, to participate in a clinical Pilates session. These sessions have kept my core strong, and enabled my body to work as well as it can, even when I’ve faced relapses which have negatively affected my balance, gait and ambulation. I really think the relapses may have been worse if my core muscles weren’t as developed as they were, thanks to regular Pilates sessions.
I find Pilates sessions challenging at times, particularly when I move up and down in a vertical plane. A way I’ve found to minimise these challenges is to shut my eyes when moving in that way – I figure that if one less sense is in play, then my balance sense improves, reducing my vertigo sensations and allowing me to complete the repertoire as best I can. It works for me – that’s the best way I can explain it!
I do have a walking stick now, and I’m using it more and more in crowds, as I find that a large number of people around me causes my balance to go awry. I also use the stick when walking on flat surfaces when it’s recently rained. Wet surfaces are my kryptonite. But, if I’m to have a stick, it’s a purple and silver stick with polka-dots – fancy!
I am now an Ambassador for MS Ltd – the national peak body for people living with MS. I socialise to members of the public about what it means to live with Multiple Sclerosis in Australia in 2020 and beyond.
Medication and Multiple Sclerosis
My Multiple Sclerosis has been reasonably active since July 2017, with two relapses between then and December 2017. In late 2017, my neurologist decided I was a great candidate for a drug treatment called Lemtrada (alemtuzumab), only approved for use in Multiple Sclerosis patients in mid-2015. Lemtrada’s active ingredient searches for a group of white blood cells called B cells, and then destroys them. There is still no definitive MS cause, but current research and knowledge suggests very strongly that B cells (triggered by an external viral infection) are the cells that eat away at the protective covering of nerve fibres, causing lesions.
Lemtrada destroys these cells, and, over a period of 3-6 months, a patient’s immune system will be busy creating brand new B cells – B cells which won’t go around the nervous system, nibbling away at nerve fibres and causing lesions. This manufacture of the B cells occurs in bone marrow, governed by the patient’s stem cells. You may have heard of ‘stem cell treatment’ in the news lately – a ‘magic bullet’ treatment which can halt many autoimmune conditions, and blood cancers. You could think of Lemtrada as a pharmacological version of stem cell therapy, if you like. Lemtrada is also the first drug for MS which has shown some anecdotal evidence of repairing existing damage – it’s not a cure at all, but it’s a really powerful medical drug.
Lemtrada costs just over $90,000 for the full course of treatment (a five-day initial treatment and a three-day top-up a year later), but, as we are lucky enough to live in Australia, this cost is covered by the Pharmaceutical Benefits Scheme (PBS). Given the oral medication I was previously on (a tablet called Tecfidera, also on the PBS) cost nearly $1,000 a month, and I had already been on it for three years, I had already had $35,000 worth of medications, with further progression of my condition. The extra cost would be offset by the fact that there is no further requirement for me to have medication – ever again – as long as Lemtrada is successful for me.
After detailed consultation with my neurologist, MS nurse and family, we decided that going ahead with Lemtrada treatment was a sensible option. So, in March 2018, that’s what we did.
Lemtrada, let’s go!
A Lemtrada journey begins a month before treatment. I came off my existing MS medication, and stopped eating any foods which could potentially cause an infection from a bug called Listeria. Foods such as smallgoods, deli meats, soft cheeses, sushi, cantaloupe – essentially I was eating like a pregnant lady. I spent 18 months being wary of my foods – til about September 2019.
Lemtrada is a drug given as an intravenous (IV) infusion – which must be done at a hospital or dedicated medical centre. On the first day, I arrived at the hospital, completed some final administration forms and had my initial observations taken; I was then led to my chair for the week. The chairs are electric recliners with the capacity to lie almost horizontally for sleep. After a few attempts, I had my cannula inserted, and was ready to go. I had the cannula in for three days, then a new one inserted for the last two days of treatment. This meant I was showering, sleeping, eating, parenting etc all while temporarily cannulated. The first part of treatment is to have steroids administered – steroids help the immune system better tolerate the drug, and they can calm down any existing symptoms.
This picture here shows the Lemtrada drug ready to go, covered in a black bag to reduce exposure to light, which can disintegrate the drug. It was a 100 mL bag, designed to be infused over 4 hours, with 2 hours of post-infusion observations. I’d use some of the time in the post-infusion observation block to do some roll-ups against a wall – the chairs were comfortable enough, but after sitting in them for five or six hours, your body locked up a bit. I found doing roll-ups released muscles in my body quite a bit – go Pilates! This meant the days were long! I would arrive at the Austin at about 8:30 am each day, and leave at about 4:00 pm. Pretty much a full-time job!
Day 1 was a little longer than usual, as I became tachycardic (a high heart rate) right at the end of my 2-hour observation period. This is common throughout a Lemtrada course. My heart rate rose from approximately 80 to 120 bpm (beats per minute) – a significant increase. My heart rate had dropped to 100 bpm by the time a neurologist arrived to check things out. She was happy to discharge me, and I’m pleased to say I got to spend the night at home with my husband and four-year-old daughter (at the time), instead of in a busy hospital ward.
The rest of the days were smooth sailing – but long. The tiredness set in on Day 4 – not surprising given there was a big party going on in my bone marrow, what with all the B cells being burst open and destroyed. I actually managed to get about 15 minutes of real sleep on my fancy recliner, no easy feat considering the busyness of patients, nurses, companions, food deliveries etc. My hourly obs were pretty sound, except for the tachycardia blip on Day 1. I had a solid heart rate in the late 70s / early 80s, and a mid-range blood pressure reading. Couldn’t fault the hospital nurses – they were super diligent in their work. At the end of Day 5, I was free to go.
So what now?
I started work again three weeks after my initial infusion. I started at home initially, to reduce my exposure to external pathogens…
I was eating lots of good food immediately after treatment – it’s super-important to nourish the body while it’s in a healing phase. I became quite addicted to the muesli and yoghurt cups at the hospital cafeteria, so I carried that through to home. I was having homemade Bircher muesli and a pine-berry smoothie for breakfast – yummy… I was quite tired from the treatment – my body had been through a lot! But, and this is key, I wasn’t fatigued anymore. There is a major difference between feeling tired, and feeling mentally and physically fatigued.
I had a follow-up course of Lemtrada in March 2019. Three days instead of five. Sadly, I don’t think my body tolerated this treatment as well as it did in 2018. I had a longer recovery time, and my gait, balance and ambulation all showed declines. I even had a couple of falls. Falls are for older people, right? Not women in their early 40s?
Up until the Covid-19 pandemic in early 2020 (and still ongoing) I was seeing my musculoskeletal massage therapist monthly. I am missing the treatment she can apply to me. A lot! My body is now in a ‘grey area’ – between Relapsing Remitting MS (RRMS – for which there are pharmaceutical treatments aplenty) and Secondary Progressive MS (SPMS – for which there is one pharmaceutical treatment, and that’s not yet approved by the PBS).
So, in this month of May 2020, heightening awareness for MS, my message is to keep the body moving! Pilates, massage therapy, gentle walks, swims. If you don’t move it, you lose it!
Thank you so much Anna for sharing your story with us. We hope that the management plan you have in place with your doctors, musculoskeletal therapist and physiotherapist you can continue to slow the progression and hopefully give the Lemtrada a good chance to repair the damage. You are a great ambassador for MS.
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