Today is important for me because it is “World MS Day” (30 May 2022) … and it’s also my birthday. How appropriate, although not as unusual as it may at first appear. If you saw my articles during MS Awareness Week (a two-post series; see Part I here and Part II here), you will by now have a little insight into the world of an “MSer” or “pwMS” (person with MS), as we are sometimes referred to (like the members of a secret club!). One of the things of which you will be aware from my first article is that the cause of MS is still under debate even after 150 years of its symptoms being acknowledged. One of the observations that has been noted is that the condition is more prevalent in people born during the months of April and May in the northern hemisphere, which some researchers have postulated may suggest a link with vitamin D concentrations in early pregnancy/life (see, for example: https://pubmed.ncbi.nlm.nih.gov/23278658/).
BACKGROUND – I have always been “tall” for my age and as an adult reached the giddy heights of 6′ 1″ or 1.85 m. This in turn meant that I was always a very popular “pick” for team sports, starting with netball whilst in junior school and progressing to volleyball, basketball, tennis and even a bit of athletics as I got older. I started playing netball whilst at junior school and continued right into my 30s, which is important for me because I think that it was the dizzy sensations I experienced during the netball games and practice drills that first alerted me to the fact that “something wasn’t right”. At the dawn of the new millennium (New Year 1999-2000) my partner and I decided to take a mega-holiday to watch the Sydney fireworks display that was famous at the time. The holiday was great, but my early concerns meant that I decided not to do the famous climb up the Sydney Harbour Bridge – the thought of it just made me feel giddy!
However, once we returned home I just went back to my usual routine with the only difference being that I definitely noticed something was wrong when I was playing netball. Being tall, I initially played in defence, but the constant turning of my head to follow my opponent did tend to make me light-headed. When I mentioned this to our coach: no problem! I merely switched to playing goal shooter (GS). I had played this position occasionally in the past and being tall was a great advantage, because my team members could simply lob the ball high and I would pluck it out of the air above most defenders’ heads. However, upon taking up the position full time, looking up to catch the ball made me feel giddy too and, on occasion, I just had to drop the ball and run off court.
At this point I decided to go and see my GP and he referred me to a neurologist. Fortunately, the BUPA coverage provided by my employer meant that I could go privately within a few weeks, and then the journey began. I was given an “open MRI” (only available via private hospitals, at that time at least) and various examinations, including touching my nose with my eyes closed and some tests on my hands where various wires and pads were attached between my wrist/lower arm and my fingers – tests that I now understand were electro-stimulation tests to see the speed of electrical messages passing down my nerves. I had several appointments with the neurologist and at our final appointment, he said that he was 98% sure that he knew what was wrong with me and did I want the diagnosis. I asked two simple questions: 1. Could it kill me? 2. Could it be cured? The neurologist answered “no” to both questions and then re-asked whether I wanted his diagnosis. In retrospect, probably stupidly, I said that if there was no cure and I was only feeling dizzy occasionally then NO I didn’t see the point of having a diagnosis.
To continue telling my story, I will now go on to answer the questions that I used as prompts for my wonderful volunteers in my second article that was posted during MS Awareness week (25 April-1 May 2022):
DIAGNOSIS – After my brief but glorious stint of private treatment (via BUPA), it was now about 2002/2003; the allocation provided by my work scheme had been used up and I now had to transfer to the good old NHS service provided by my local hospital. At that time, they had no “MS nurse” and only a general neurologist with whom I didn’t really get along. At my first meeting with him, he just bluntly announced that I had Multiple Sclerosis (MS),that I seemed okay and that they had no treatments that they could offer, and I was then put on a four-monthly check-up schedule. At each appointment, I was just asked to walk the length of the office before sitting down, a few notes were taken and then I was told that there was still no treatment that they could offer and that they would see me again in four months’ time. Infuriating! (Thankfully my care did improve later on, as discussed below.)
WORK – Taking things back in time a little: in the summer of 1998, having passed my UK finals examinations, I started work at a global packaging firm where I started to do “real” IP work every day, handling patents, designs, etc and advising the business on different types of IP strategy. I worked for a gentleman who was retiring and from whom I was employed to take over. The business for which we were responsible was composed of numerous individual subsidiary companies based in Germany, Switzerland, France and Scotland, each with their own products and business styles. It was great meeting with so many different personalities and flying to meetings at their various locations. In 1999 I passed my European Qualifying Examinations and I was promoted to Head of Department in 2000/2001, after the outgoing head left.
My condition was “invisible” for several years and in 2004, my local NHS hospital managed to employ an MS nurse and I started to take my first disease-modifying drug (also known as DMDs), which required weekly intramuscular injections. They were great during the working week, but often made me feel tired and achy at the weekends and so, after about three to four years, I decided to stop taking them without telling my GP (probably another stupid decision, but I’m just “bloody-minded”). When I went back to my GP (who had changed by now) I was again referred to the hospital, to the same MS nurse but a new neurologist, and provided with information on several different DMDs that I could try. My first choice required daily injections and, to my mind, did nothing. So I then changed to the drug that I had up until then been avoiding because, although it was considered very effective, there was a small chance that it could cause a brain condition called PML (progressive multifocal leukoencephalopathy, for those of you wanting the long name). Before that point my cognitive function had never been affected and so, until other treatment options had failed, it was simply a risk that I was not willing to take.
I was initially diagnosed with Relapsing Remitting MS (RRMS), but 2010–2012 were particularly stressful at work and during this period I was informed that my MS was probably moving towards Secondary Progressive MS (SPMS). Over time, I have progressed from walking down corridors touching the walls, to falling over (fortunately outside work) and then to some quite spectacular falls whilst working. I started to use a walking stick, then two, then crutches and finally a wheelchair. However, I have been very lucky in that nearly all my symptoms have been balance-related and I have largely avoided “fatigue” and the more painful symptoms experienced by many people. (Information on the different types of MS and some of the most common symptoms is set out in my previous article).
FREE STATEMENT – Like nearly all the volunteers who helped me with my second article during MS Awareness Week I would also reiterate that no two people with MS have the same experiences and/or symptoms. Despite my MS being difficult to handle at times and not something that I would have wished on anyone, the uncertainty around my condition and particularly the later stages where I have used a wheelchair have made me much more appreciative of the issues that many people face (often hidden), and conscious not to judge people superficially, and to be willing to treat everyone as “people” and be open to discussing their particular needs.
Everyone who can take part in society deserves the right to, whether that be through work, sport or other social activities. They deserve the right to achieve their potential (whatever that may be) — not through some feeling of “pity”, but because we all have something to offer. This is best achieved through having an open mind and promoting diversity and inclusivity, from which everyone benefits.
Sources of information
If you’d like to know more about the issues raised in Debra’s articles, please visit the websites of the Multiple Sclerosis Society and the Multiple Sclerosis Trust.
Page published on 30th May 2022
Page last modified on 30th May 2022