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.

Peeling away the layers

The TCM experiment continues, with some success. Since I've been receiving regular treatment - acupuncture, cupping, and more recently a special custom blend of herbal tea, there have been some noticeable changes and improvements.

My principle objective measure is the weekly strength tests I apply, and on that basis, there is more sustained strength in three of the four fingers I test on my right hand. The strength in those fingers used to start decaying after 3 weeks or so, but are now staying stronger than ever after 5 or more weeks. In addition, I've been stretching the period between infusions past six weeks.

My index finger, unfortunately, is showing little improvement at all. It is still the weakest by far, with barely 5% of what a normal finger strength should be. The practitioner has tried several things particularly directed to the function of that finger, but with little effect.

The original diagnosis was "too much heat" (whatever that means in Chinese energy terms) and that was being treated. Since that time, as there have been improvements in that aspect of my energy balance, other issues have surfaced and continue to be treated. She compares it to layers of an onion - as one problem clears up, others problems are more visible.

The biggest challenge for me is to get in touch with my own body. I certainly feel a little more relaxed and have more energy. My New Year's resolution was to exercise more (whose isn't?) and I've been walking 3-4 times a week steadily. I'm doing that with far less fatigue than in the past. So far; so good.

One issue that doesn't seem to go away is a bicep problem, which has been with me on and off for several months now. When it first popped up, my neuro sent me for some ultrasound imaging, which showed nothing. However, the pain when flexing my bicep didn't go away. Eventually, I went for some physiotherapy, which has helped a bit. But then it recurred, and took a step backwards after I played cricket (have decided to take a break from that until it's all better). No-one is yet to give me a diagnosis, although the physio suspects it is tendonitis. Today, my neuro injected some cortisone in the area, which was a most unpleasant experience. The arm was sore for several hours, and I was also quite nauseous. If that doesn't help in a week or so, then it's off for another MRI to see what it can see.

Too much heat

Back in March, I decided to investigate some alternative therapies, and was referred to a traditional Chinese medicine (TCM) practitioner. He was quite a character - a gentleman in his early 60s - who spoke in Australian vernacular, but with a Chinese accent. His appointments ran about a month in advance, which seemed to bode well for his reputation. After feeling my pulse, looking at my tongue and my eyes, he pronouned his assessment: "you got too much heat; you need to bloody-well slow down". Yes, I work long hours (well, not as long as I used to). Yes, there is a lot of stress in my life. Yes, my mind races in overdrive all the time. Yes, I eat spicy food.

As someone brought up on western medicine, I asked the obvious question: what is the link between the diagnosis and my symptoms? No ... it doesn't work that way. The diagnosis is that I have too much heat. How that manifests itself may differ from one person to another. Fix the underlying problem, and my balance is restored, and this should result in the symptoms going away. It's a totally different approach - treat the person, not the illness - and difficult for me to get my head around.

Yet, he was a no-nonsense sort of guy. He put it quite simply: start with three treatments, and if you don't notice an improvement, then this probably won't work for you. So he went at me with needles, cupping, and a handful of other things. I cut out spicy and deep-fried foods.

Three weeks later, there was a small improvement to my "heat", but there wasn't much noticeable change, so we decided to quit there.

I was a little disappointed - I was hoping there would be an alternative therapy answer, especially after coming back from the Mayo with little encouragement. But I also needed to take a measured approach to dealing with this, and not just throw s**t at the wall hoping something will stick. Although in hindsight, it was a particularly stressful time of my life, so I thought it might be worth revisiting at some point in the future.

So a couple of weeks ago, I put out feelers in the "network" for some good TCM practitioners, identified someone, and made an appointment (didn't take a month this time), and she examined me in the usual way in our initial consultation. Her diagnosis: too much heat ...

No diagnosis, but successful treatment

Usually, when something is wrong with you, you get a diagnosis, and that leads to a course of treatment to fix what is wrong. So what happens when no-one can work out what is wrong with you?

The neurologist at first thought my sore bicep was unrelated to multifocal, but saw what he thought was a lump. After ultrasound revealed the muscle was normal, he was stumped. He suggested anti-inflammatories, but they didn't help, and there was no evidence of inflammation in any case. My pilates instructor (who is also a physiotherapist) didn't see any indication of muscle damage, and there was no trauma event that triggered this.

The only person to provide any explanation was a massuese, who said the muscle felt matted and dehydrated, which might have been because I was getting my infusions in the same arm all the time, and the "juice" flowed through the big bicep muscle. Both the nurse who administers the infusions, and my neurologist said this was nonsense from a medical perspective. Although I did get the most recent juicing in my left arm. Unfortunately, my veins aren't as prominent in that arm, so all I had to show were some nasty bruises.

After all that, the bicep pain continued, so I thought I'd try some physio - massage and ultrasound - and that is working. The physiotherapist still has no idea what the problem was, but if the shoe fits, then ...

new symptom?

Yes, it's been way too long since I've written. Miss me? Sorry, a lot has been happening and some complex reasons why I haven't updated thing here. I will probably do a few back-dated posts to talk about some of the interesting things that have been happening. In the meantime ...

For the last few weeks, I've had this weird pain in my right bicep. It happens whenever I flex it to lift something heavy. There isn't a loss of strength, but there is pain, and there wasn't anything (that I can recall) that happened to me that might have caused it. At first, I thought it was muscular, so I asked the physiotherapist that I do pilates with regularly. She said it didn't look like a muscular injury, and it hasn't been getting any better (which you'd think it would over time). If not muscular, then ...

I got in touch with my neurologist's office (who was away), and they suggested an appointment for as soon as he returned. He looked at it, and felt it wasn't related to my multifocal motor neuropathy. As I flexed the arm, he spotted what looked like a lump. He figured it was either a ganglian or a hematoma (i.e. nothing really bad), so he sent me for an ultrasound ...

The ultrasound technician looked high & low, left & right (well, actually just right, but it sounds good), and concluded that there was no swelling and no lumps!

The neurologist still thinks it's unrelated to MMN; the physio says isn't not inflamed or torn, and of course it still hurts when I use it. So what now? I'm taking some anti-inflammatories to see if that fixes it. No-one has any explanation, so it's just the usual trial and error :(