Bluffer's Guide to MS

Here comes the science...

MS is a degenerative condition of the central nervous system.

The white blobs you see on the brain scan (MRI) above indicate de-myelination that is typical of MS (note: this is not my brain. The NHS lost my MRI results (and just about every other set of test results I've ever had) years ago).

The cause isn't known, and while there are treatments that can slow the progress of MS and ease some of the symptoms, there is no known cure.

There are around 85,000 people with MS in the UK, and no two of us are exactly alike.

MS comes in four varieties:

• Benign


• Relapsing remitting


• Secondary progressive


• Primary progressive

I've known I have MS for nearly 16 years now.

I was diagnosed when I was 20, after 18 months of unexplained symptoms.

Prior to my diagnosis I had a test called a vision evoked potential that measures the speed of communication between the eye and the brain. The results strongly indicated MS and with my family history of MS (my paternal grandmother had MS) and my history of symptoms MS was diagnosed.

Shortly after diagnosis, I had a horrid test called a spinal tap (or lumbar puncture). The results were negative, throwing my diagnosis into doubt once more. The neurologist suggested that what I had could develop into MS but that the next five years would be critical (if I did not become significantly disabled over the following five years then the prognosis would remain good).

Six years after diagnosis I finally had an MRI test. You may wonder why I had to wait so long to have what is now considered to be the most important diagnostic test for conditions of the central nervous system. Quite simply, the equipment was available in very few hospitals back then. It was only when I moved to London that I could visit a neurology department that had an MRI machine.

The MRI showed scarring on my brain consistent with MS. My diagnosis was finally certain.

Apart from the odd bout of this and that, to this day I remain virtually symptom-free. Clearly, this is good news.

But MS isn't just about your physical body. Knowing that you have a condition that might get much worse over time, and knowing that the choices you make in life might impact on your future well-being has a profound effect on you emotionally. On the one hand, you feel inclined to just forget about MS when its symptoms aren't in evidence. On the other hand you are a person with MS. That is your identity.

Isn't it better for your mental health to be realistic about what the future might hold and to keep MS in mind as you make important life decisions?

I was only 20 when I was diagnosed. On the one hand this may seem 'tragic' and unfair. However, I feel grateful that I at least know how important is to look after myself and my future self now. My careful treatment of myself over the past 16 years might be why I'm doing so well physically today. Who can say? But I am absolutely positive that knowing I had MS early on has helped me to remain well emotionally and psychologically.

I do not want to have MS. But as I do, I'm grateful that I know it. Because knowing it means I have the best possible chance of making the best of life and making good decisions. In its own funny way, that's a gift.

Find out more about MS on the MS Society website.