Introducing the disability graph: The long term reality of MS

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.

My MS

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.

 

11 comments

  1. Hi there, lady with MS. A very clear, though sobering post for your followers. It’s a chart I’m very familiar with, as an MS Nurse. However, for a graph in a more hopeful direction, take a look at this research:
    http://www.overcomingmultiplesclerosis.org/html/blob.php?documentCode=13468

    One point for correction, NEDA stands for NO evidence of disease activity, and is a goal of treatment. disability tends to be measured on the EDSS (or Kurtze expanded disability scale).

    How are you finding gilenya?

    Keep up the good work

    -Miranda. ( http://www.mirandasmsblog.com)

    Liked by 1 person

    1. Thank you MirandasMSBlog. Your feedback – and correction – is most appreciated. I have amended my blog to reflect the correct terminology (and made a note of the amendment).
      As for Gilenya, I am a big fan. I have been on it for about six months, and so far have no side effects that I am aware of. I also feel better than I have in years (although I should note, I have radically cleaned up my diet in this period too).

      Like

    1. I have had three relapses to date, and it takes me at least three months to feel 100 per cent again after each. The first couple of weeks are the worst, with symptoms persisting and deep fatigue. So far I am lucky, I have recovered completely each time. I should day, I took methyl prednisone for the first two relapses, and had just started Gilenya for the third.

      Liked by 1 person

      1. So no bowel problems or trouble with energy or brain fog or neuropathy type pain? Does 100% for you include not being in pain at all or experiencing balance or coordination problems? I hope you don’t mind me clarifying because I find this statement very interesting.

        Liked by 1 person

        1. Not at all – I write a blog about my MS, I’m happy to answer questions about my experience as best I can (remembering that I am no doctor, just another woman with MS)!
          I have no evidence of disease activity on the disability scale, making me a 1 or maybe a 1.5 out of 10 (which equates to no disability). That does not mean I don’t have a bunch of lesions that even I can see on my brain and spinal cord. Also, I had neuropathic pain and bouts of fatigue for years before my first MS episode, and I still do. So I guess I consider myself at 100 per cent even with those, which have been a part of my life for years. I simply feel lucky that I now show no evidence of the symptoms that manifested during my relapses, which included cog fog, disorientation and balance issues, a tonic spasm and a weaker left side. I have (and to date have not had) bladder or eyesight problems (although I will write about them when and if I do).

          Liked by 1 person

          1. I enjoyed this whole comment thread because like Jesus, I’m wildly curious about others’ MS. Just when I start worrying because the last 10 accounts of MS I’ve read about don’t sound anything like what I’m experiencing, I then read 5 in a row that experience everything I am. 🙂

            Liked by 1 person

          2. That is MS – completely damn random… although with an unfortunate common thread of disease progression over time. I’ll never get tired of hearing abut other people’s MS stories.

            Liked by 1 person

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