World MS Day is officially marked on 30th May every year. In 2019, World MS Day is on Thursday 30 May. The themes each year are chosen by MSIF (Multiple Sclerosis International Federation) in collaboration with its member organisations including MS Australia. The 2019 campaign will be called ‘My Invisible MS’ and the theme is Visibility.
My Invisible MS will raise awareness of the invisible symptoms of MS and the unseen impact of MS on quality of life.
The campaign will give a voice to everyone affected by MS to share their invisible MS symptoms and express what they want others to know and understand about MS to challenge common misconceptions and help people understand how to provide the right support.
On this World MS Day, Milton Village Medical would like to thank Dr Jennie Roberts for sharing her own personal story about her diagnosis of MS and how it has affected her life and family. It is a warm, open and heartfelt memoir and we hope it helps create Visibility concerning MS to our valued patients and community.
Jennie is taking part in the May 50K to raise funds to support MS research. She will be running and walking 50km throughout May (total 100km). She believes that medicine is close to finding a cure. If you would like to sponsor Jennie in this challenge, click on the link below.
For more information about MS visit the MS Australia website https://www.msaustralia.org.au/what-ms
Multiple Sclerosis memoir by Dr Jennie Roberts
My name is Jennie Roberts. I'm 46. I'm a radiologist (doctor) subspecialising in neurology.
I am married to an Englishman - a psychiatrist - and we have 3 wonderful children.
I was diagnosed with Relapsing-Remitting Multiple Sclerosis (RRMS) in 2012. February the 8th to be exact – I remember the day well.
I woke with pain in my right leg and felt generally unwell. It was only that night when I got in the shower that I realised I couldn’t determine the temperature of the water on my leg. I got an icy pole out of the freezer and worked out what level (dermatome) it went to and went to bed – I was tired. The next day I wrote out my own MRI request form (got a colleague to sign it) and had an MRI. I had an incidental little benign nodule on my brain, so they gave me contrast. I then reviewed the images and saw a lesion in my spinal cord and asked to go back on the MRI scanner to see if it enhanced. It did. I also had one lesion in my brain which didn’t enhance.
I saw a neurologist shortly thereafter. He told me I had Clinically Isolated Syndrome (CIS) (it’s like a precursor of MS) and if it was him he wouldn’t have treatment. I wanted a second opinion and decided to see the expert in the field. I had an appointment with her 2 weeks later.
She took my history and was very thorough. She told me MS incidence was higher in the well-educated. I was slightly chuffed! I had fatigue and had experienced some other symptoms as well and she thought it was enough to call it MS.
I started a medication called Copaxone about 2 weeks later.
2012 was a tough year, coming to terms with the diagnosis and pain in my leg.
I looked like I may have been coping on the outside, but I wasn’t on the inside.
Then one day my sister Ali told me about this book – Overcoming MS (OMS). She told me that I needed to follow a pretty strict diet. I said, “I can’t deal with strict diets at the moment, I need my alcohol.” She then read it some more and called me back and said “it’s ok … you’re allowed to drink alcohol! “I bought the book. It became my bible.
I never went to a retreat and I'm not sure exactly why.
I did look at dates but when I was diagnosed, I was working full time and had 3 children aged 7, 5 and 3. I also had a holiday planned … climbing Mt Kilimanjaro for my 40th later that year.
Although I was anxious my husband and I still went and climbed the mountain. It was great and maybe as good as a retreat.
I think it took me about two years to, as I say it, put everything in place (the OMS way).
I asked my neurologist about the OMS way one day and why she wasn’t prescribing it and she said she thought the diet was too restrictive, but she strongly believed in reducing stress and looking after yourself.
She wanted an MRI every 6 months, but I wanted yearly. I won, but in hindsight she was right. We are back to every 6 months now. I was stable for a couple of years but then one or two new lesions would creep in. She wanted to treat me more aggressively, but I resisted. Then after 6 years on Copaxone I developed a lesion in my cervical spine.
I started Tysabri medication. I had 3 or 4 cycles, but a test for a virus called JC virus came back as positive, meaning I couldn’t stay on the treatment long term. I was relieved in a way when because the Tysabri did not suit my lifestyle. It is a great drug and for some people it’s super effective but you just have to go to hospital once every 4 weeks. With my busy lifestyle this was a real inconvenience.
My neurologist insisted on Lemtrada medication. I really didn’t want it. I thought to myself “why should I have this when I feel so well?”. She convinced me when she said, “If it was my daughter I would insist she have it.” I had it.
The first Lemtrada treatment is 5 days in hospital with IV steroids and the Lemtrada itself. Each day there is the steroid infusion which lasts an hour and then the Lemtrada which goes for 4-5 hours. I was very nervous but the nurses and rest of the staff were so lovely. I read lots of books and wrote lots of emails. I had so many friends visit. I would escape the hospital every morning and walk along the river (with a friend) for 30mins before I would start my treatment. The nurses weren’t too happy about this. I also went out to dinner one night with my family.
I felt well. My pulse rate did drop to 40 (from baseline of 50) which did cause some concern, but I felt fine. I then had two weeks off work. I had to tell everyone at work not to come close if they had a cold as I had no white cells. Most of my colleagues already knew …. many have been my support crew!
It takes about 3 months for the white cells to come back (the new and improved, better behaved ones I call them). So, there is a real risk of infection.
About 6 weeks later I went for a walk with my husband (we usually run together on a Wednesday but that day I suggested a walk) and noticed I was short of breath walking up a hill. I had a temperature. I was admitted to hospital for 4 days with viral pneumonia. I also had mild epigastric discomfort and was found to have an inflamed gallbladder. This was probably an allergic reaction. This all settled down with no further repercussions.
Treatment required 3 months of antiviral tablets and a mandatory ‘pregnancy’ diet to prevent listeria.
The second Lemtrada treatment was the same, just 3 days - one year later. I finished this in March 2019.
That’s it! Hopefully no more treatments.
I am on the Lemtrada watch program … it all sounds very official but it’s really not a bother.
I have a blood test and urine test every month for the next 4 years.
There are side effects, which in my opinion do not outweigh the benefits of this treatment.
I feel so much better. I didn’t realise I was unwell before and in retrospect had normalised my tiredness. I now have more energy and I had brain fog. I never believed in that term but now I do. It’s like my brain was in treacle and now it’s not. I didn’t have problems thinking before but in retrospect it was hard work!
So, my journey with MS so far, like for many I’m sure, has been a turbulent one and I know it may not all be smooth sailing from here, but I see myself as very lucky and have learnt to value each day as it comes.