This is a question I’m wrestling with on a daily basis. My symptoms affect my mood and anxiety levels, and understanding how bad they are has practical implications. If they’re getting worse, then it could be a sign of a relapse and I might need medical intervention (although as I’m starting to find out, there’s not much that can be done to reduce the damage, just the recovery time).

One of the ways I’ve been advised to monitor my symptoms, and I assume other MS patients are too, is to keep a symptom diary. I’ve been doing this regularly since the beginning of this year and more sporadically before that.

Until very recently I’ve just been logging the physical symptoms and levels of fatigue. But as the diary has got larger it’s become difficult to get a quick sense of any pattern or whether things are generally getting better or worse.

So I decided to develop a scale to assign a number for how that week has been. I’m finding it helpful, psychologically at least. But it does have a couple of absurdities which tell me something about my attitude to the disease. And the challenges I’ve found in developing a useful scale for myself appear to be replicated in the scientific literature.

I started out with a simple 1-3 scale, 1 meaning ‘symptoms bad’ and 3 ‘symptoms good’. But this just didn’t cut it.

I couldn’t bear to think of having to label my symptoms as 1; they have never been bad enough to be at the bottom of any scale – and even the thought of assigning them the lowest number on the scale was something my mind turned away from. I’m really not ready to contemplate the worst.

I also couldn’t see myself ever assigning the top end, right now, that for me would be no symptoms, life back before the diagnosis and the first relapse; it’s basically unattainable as a number I can assign (which speaks to my post last week about feeling angry and tired).

A scale where every diary entry is labelled two because I can’t bring myself to use the two extremes is clearly not a very useful scale.

So I’ve evolved a slightly ridiculous 6 point scale, where the 1 and 6 are never likely to be used, but there’s enough definition in the rest of the scale for it to have some value. I shade entries given 1 or 2 red, 3 or4 orange, and 5 or 6 green which means that I can visually see how things are going.

But of course, I’m always conscious that the number I assign is significantly impacted by my mood. If I’m feeling positive and not anxious then I’m likely to assign a higher number than if I’m down.

My struggles to give some sort of self-assessment of how I’m doing mirrors what I think I’m seeing in the literature. What little I’ve read about the efficacy of different treatments suggests that there isn’t a single measure for the severity of an MS patient’s symptoms. Instead there seem to be a number of different scales used to measure how badly people are affected by the disease and therefore how well a treatment works.

This matters for all sorts of reasons, but I’ll pull out two here.

First, it matters because the severity of your symptoms affects which drug regimes you might be put on. Slightly tangentially, I have a sense that post my diagnosis I was on a pathway to monitor my symptoms because they were judged relatively mild (and let’s be honest, they are pretty mild despite their significant impact on my life).

And then, in my first conversation with my MS nurse, I mentioned one symptom I hadn’t thought to bring up with my consultant.* It felt like I was then on a very quick journey to being offered disease modifying therapy and starting a course of treatment.

Second, it matters because to be able to compare the effect of different treatments you need a common measure. I really am at the start of my journey in understanding any of the literature (hence my suggestion for a reading group in this post). However, the apparent lack of common scale used by different research programmes makes it very difficult to assess the effectiveness of different treatments, at least for a lay person like me.

Measurement matters, both for me specifically, and for understanding MS in general. But the challenge with a disease that has so many different effects, both physical and psychological, is how to make an objective measurement.

*there’s another post in this if I can write it in a way that I don’t end up worrying I’ll compromise my relationship with the MS team