Occasionally I write a post and I know my family and friends aren’t going to like it. This is one of those posts, but it is something I think about.
The day my neurologist drew me a picture
The day I first saw my current neurologist – two weeks after my diagnosis – was the day I first began to understand MS.
He drew me the MS disability graph. I kept his drawing for about a year, filed neatly in my ‘I have MS’ folder, until I threw it out in a fit of anger masquerading as Spring cleaning.
But I drew it again this morning (yes, that is my drawing). You can find many different versions on Google images (take a look here). They are all different, but they illustrate the same easy-to-understand but emotionally difficult concept to accept: the trend of disability progression in MS.
Disability progression in MS
Before I continue, a few caveats. Every case of MS is different. My drawing is not meant to indicate definitive disease progression, nor does it represent my disease progression to date. My drawing is not to scale, but it does illustrate the general prognosis for three types of MS – Relapsing-Remitting MS (RRMS), Secondary-Progressive MS (SPMS) and Primary-Progressive MS (PPMS). In short, my drawing is simply the way my neurologist explained MS to me.
I have RRMS. It is the most common form of MS (given current definitions, although there are suggestions these may change), and the type of MS most people are initially diagnosed with. RRMS is characterised by relapses followed by periods of remission. Over time, some disability is accrued, although the aim is to recover as completely as possible after each relapse and not be left with any lingering impairment. The goal of disease modifying therapies is to reduce the frequency and intensity of these relapses, and thus reduce the rate of disability accrual. To date I have recovered completely from each of my three relapses.
Sometimes RRMS turns into SPMS. This means that relapses cease but the disease – and over time disability – continue to progress.
Less frequently than RRMS, people are diagnosed with PPMS. While there are no relapses in this form of MS, there is ongoing decline and disability progression from the outset. There are also no disease modifying therapies currently available.
Basically, the longer someone has MS the more likely they are to accrue disability in some way, shape or form. For all types of MS, disease progression is tracked through the Kurtzke or EDSS (Expanded Disability Status) Scale. Also relevant is a series of indicators called NEDA – No Evidence of Disease Activity. And of course, having no evidence of disease activity is the goal of treatment.
Like anyone with MS, I’m wary about how the disease will progress. My neurologist can track my disease over time, but there is no way to predict how my MS will progress (or not).
That means living with a very high degree of uncertainty, and finding the freedom – not the fear – inherent in that.
Post script: This post was amended for accuracy on Tuesday 18 August 2015.