With thanks to Fiona

No, I'm not dead. Nor am I wheelchair-bound, trapped inside a crippled body, as I feared with the initial diagnosis of multifocal motor neuropathy. In fact, it's rather the opposite.

Yes, it's been a while since I've posted on this blog. From time to time over the past few years, I've thought about updating as my situation progressed, but always found something else to do instead. What prompted me to dig up this blog is that Fiona, after nearly 10 years of treating me with acupuncture, is leaving Melbourne to embark on the next stage of her life. As we reflected on our journey at my last appointment, it felt appropriate to put another chapter on this story.

How did I get here? After an initial unsuccessful attempt at TCM in March, 2010, I gave it another shot in October that year with Fiona, and embarked on what would become weekly appointments over six months (one month per year that the condition was present). The regular IVIg infusions had side effects that were worse than any benefit they delivered. Western medicine had failed to help, so it seemed reasonable to try something completely different.

As a needle-phobic, it was ironic that I was trading one big needle for lots of small ones, even more often, but them's the breaks. Indeed, learning to be comfortable (or rather, less uncomfortable) being jabbed was part of the journey.

After six months of treatment, I was feeling somewhat better. But in addition to the acupuncture, I had learned some other skills: how to breathe, and how to listen to my body. It's hard to underestimate how important those things are. After the initial intensive treatment period, we switched to monthly maintenance and an ongoing journey of looking after myself better.

As this new treatment plan progressed, the infusions reduced in frequency, as did visits to the treating neuro-physiologist. In 2014, I felt there was nothing more he needed to do, and we decided that unless anything changed, it would be my last visit.

In addition, I wanted to have a GM1 antibody blood test ("for old times sake?"). Usually, one only does a diagnostic to help make a decision, but that was not the case here. Rather, it was purely to indulge my curiosity. I had been looking after myself, and suffering few if any symptoms, and wondered if I still 'had' MMN, or if it had magically disappeared. The blood test returned a slightly elevated level of antibodies, but way below what it was the last time I was tested.

To me, that was sufficient to declare officially that I was 'in remission', whatever that even means.

Could one say that I 'beat' the disease? Hardly. No-one knows where MMN comes from or what causes it. There is no known cure. There are some treatments that work to varying degrees, and then don't work. It's not clear why. My doctor said that in some patients, MMN just "burns out". Bottom line: there is very little I can say with certainty.

Reflecting on the journey, I link my case to stress. At the time I was diagnosed, I was burning the candle at both ends work-wise, and had several additional sources of stress in my life. You might say something had to give. Now, I'm in a much better place. Life is far from stress-free, but a lot less than some twelve years ago. Most importantly, I look after myself: breathe, relax, exercise.

The analyst in me craves more scientific deductions than that, but that is unlikely. I wish I could tell other people with MMN that reducing their stress would improve their condition. For that matter, I wish there was some longitudinal research on people with MMN to understand what interventions work, and how the disease progresses. But none of that is going to happen, simply because the 'market' of people with this illness is way too small.

Looking back with Fiona on nearly 10 years of treatment, I'm very grateful to her not just for sticking thousands of needles into me (they are ultra fine gauge, and she's very good at putting them in, and I've also learnt how to breathe through it), but for teaching me so much about myself. I hope she can help many more people in her special way.