Where did my MS come from?

Multiple Sclerosis has no known cure and ‘experts’ still debate the best approaches to its treatment and prevention. Each patient seems to experience the condition differently (“my MS”)- with different symptoms and impacts upon their lives. No one can say how quickly a given individual’s condition will progress and the variation in future prognoses pretty much covers the entire spectrum of possible health outcomes. The different types of MS are not black and white, but a swirling mix of overlapping and blurry greys. Even with the benefit of hindsight it is difficult to accurately chart how an individual’s condition has progressed because the identifiers of the condition (multiple scleroses on the brain and spinal cord) may remain stable as a patient’s symptomatic presentations evolve and change (or vice versa). Despite all this, the ’causes’ of MS are pretty well understood… it’s just that they are difficult to describe succinctly because they are a blend of genetic, behavioural and environmental probability factors: the condition is as difficult to prevent as it would be to deliberately contract. Triggers or indicators of the condition have been computed using pools of data – no scientist have ever (or will ever!) sit down and carefully analyse where my own, individual and unique condition has come from… to tackle this frustration I can but hypothesise – see below – and apologise for a self-centred blog.

MS is most commonly diagnosed in adults in their thirties (tick for me); but with a 3:1 ratio weighted towards women. There is a genetic predisposition to the condition that appears to be triggered, not by a single gene, but by the complex interaction between ~100 different genes, each of which, individually, only has a small effect. If you have a first-degree relative (sibling or parent) with MS, you are 20-40 times more likely to have the condition yourself. However, as far as I know, no one in my family has ever been diagnosed with MS before me (‘what a trailblazer’). This is not uncommon though: only 25% of individuals with MS have a genetic disposition to the condition; I can assume that I sit with the majority of sufferers who have developed their conditions due to environmental or behavioural drivers instead.

“Environmental and behavioural” factors do not necessarily mean factors within an individual’s control. Some certainly are: diet, tobacco smoking, stress levels, sun exposure to name but a few, but I refrain from ‘self-blame’ – more statistically significant triggers can be put down more to simple bad luck e.g. exposure to a certain virus etc.

Never having smoked, and (largely) having led a life with a healthy diet and outdoors sports / sunshine, I would not have said that I stood out as a high risk individual. I do, however, read with more interest the theory that the consumption of cow’s milk from an early age may later cause your immune systems to ‘attack’ the myelin sheaths around your brain/spine, mistaking its proteins to those previously identified as being ‘foreign’ within milk. I wonder if, during all those years of veraciously eating bowls of milky cereals and iced milk drinks, I accidently trained my body to attack the wrong proteins. Whether you subscribe to this theory or not, it is acknowledged that MS-issues only arise if your immune system starts getting direct access to layers of your brain/spine that are usually locked safely away behind “the blood brain barrier” . This may happen for several reasons – best summarised as either being through viral infection or trauma.

In my time, I’ve managed to bump my body (read: brain/spine) in a whole host of different ways – most pertinently from bike, skiing, footballing (and the occasional car) crashes – but the statistical links between the Epstein-Barr-Virus (EBV) and future MS diagnoses seems, in my case, to ring more true. I endured Glandular Fever (caused by the EBV) in my late-teens – and my case was fairly typical: I was initially ill for 2-3 months, but suffered several more minor relapses of very similar symptoms for several years afterwards. When I began to start suffering from MS some 12 years later, I initially could only articulate my symptoms as being “exactly like the glandular fever I used to have” – lethargy; fatigue; aching & buzzing muscles and swollen & painful glands. To have now read of a link between EBV and MS seems to completely justify what I had been telling different doctors for all those years: that it felt like I had glandular fever again (tests only confirmed that, yes, I did still have the virus in my system) and it felt as though my spine was ill or infected in some way (and, ps, yes, I do think several doctors will have thought that I was a hypochondriac and a bit nuts…)

But, trying to conclude from the above, drinking lots of cows milk, then having glandular fever, will not have guaranteed my development of fully blown MS. On the one hand, theories that explain MS as a disease of diet and lifestyle choices don’t seem to fit (and I don’t think that this is just a defensive reaction to perceived ‘victim blaming’) – but, on the other, I think a simple explanation of “bad luck” shies away from an answer. Perhaps I’m failing to acknowledge the amount of refined carbohydrates, sweetened drinks and red meat (read ice-creams; shakes; burgers; energy drinks; and flavoured milks) I smashed my way through in my teens and twenties. I was always so active that I perhaps mistook a low body mass index and fat count to mean a healthy diet. Maybe I mistook the hours I spent playing outdoors in the summer to mean a Vitamin-D rich lifestyle, when, being brought up in London, I’ll have spent many a winter’s weekend hiding from the rain in cinemas and playing computer games.

Of course, who cares now? I’m not sure why, but the answer to that rhetorical question is “me”. It’s somehow comforting to know how I have been put together, and to understand that I haven’t just been afflicted by the tap of a magic wand.

On this third rock from the sun, spinning through the vastness of space, our little lives all come down to atoms, molecules, blood-brain-barriers and lymphocytes. I wonder what’s going on now as somewhere behind the scenes, my immune system goes about its busy work, hopefully doing more good than harm.