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.

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 :(

Blood, Sweat and Tears

My first stop early on day 1 (we're talking 6:30am) is registration, and then an interview with a neurologist, who takes a comprehensive history, and gives me some rudimentary strength and nerve tests. She goes back to order a series of tests, and eventually they present me with a schedule that will keep me busy for the whole week. I keep asking people when I will get to meet Dr House, and some of them get the joke. No sign of Cutty, or anyone looking even half as hot, which only shows how fictional medical TV series are.

1. Blood
This place is a factory. First stop is specimen collection - I have to collect 24 hours worth of pee, and they give me a generous bottle, as well as an opaque bag to keep it in as I walk around. Because I have had fish on the plane, I have to wait until the next day to start this. Then it's next door for some blood tests: I ask for have it lying down because I'm a queasy woose about these things, and the technician is very sympathetic and does an excellent job in taking eighteen tubes out of me. Man, that's a lot of blood!

Next stop is for a skeletal survey. This department is very busy and all appointments are running late today, and I end up waiting well over an hour to be called. They have a few TVs and computers with internet in the waiting area, which is very handy. Eventually they call me in, and x-ray just about every bone in my body. In the middle, someone comes in to tell me that I'm going to be late for the EMG test scheduled for later that day, and they've shuffled it around to the next day, and prepared a revised schedule. I am overwhelmed by how well-organized this place is.

2. Sweat
From there, I go for an autonomic test - something I've not done before. They put you on a table, attach a bunch of monitors, and test how you sweat during certain activities. This test measures how the nerves work that control blood pressure, heart rate and sweating. This was quite innocuous, and because my EMG was moved to the next day, that was it for me.

The next morning, day 2, I had the thermoregulatory sweat test. Now this one is a doozie. You strip down, lie on a bed, and they cover you with this powder. Then they slide you into this "hot box", which is progressively heated up to 38C (100F) over a period of around 45 minutes, and they monitor how quickly and where you do or don't sweat. The powder changes colour to purple as you sweat. The box is all sealed, but has cameras so they can take pictures of you all (or half) purple covered in only a loin cloth!

After a while (and it's not easy to keep track of how long you've been there), the heat gets quite oppressive. Of course you have to lie completely still through all of this, and listen to the muzak they have playing. It was like being trapped in a lift on a hot day with the air conditioning broken down. Eventually, the operator offered to change the music selection - in addition to both kinds of music (country and western), they had some Sheryl Crow, which was the best of what was on offer.

3. Tears
Next test for that day was the big one - EMG. They do a nerve conduction study first. That part consisted of sticking electrodes to my arms, zapping me with electric shocks at various points, and measuring how much I flinched (sort of). Last time this was done, they found conduction blocks in both arms, which is what gave rise to the diagnosis of multifocal motor neuropathy in the first place. Some of the electric shocks are pretty full-on. I've never been shot, but I imagine that's what it might feel like - a very sharp, intense and localized pain at various points on my arms and legs.

The whole thing was being observed by a visiting neurologist from Switzerland. He seemed like a nice enough fellow, and I didn't have a problem with another person watching my pain.

The second part - the EMG - was done by the neurologist. This involved sticking needles into various muscles, and "listening" for the electrical signals going through as the muscles are activated. So, say, with the needle in my hand, he would push down on a finger, and ak me to push upward. The pain is nothing short of excruciating, particularly in a few spots around the fleshy part of the hands below the thumb. After a few on the left side, I started shaking and teeth chattering. He then moved to my leg, and finally did just one on my right arm before deciding it was enough.

After it was over and they all left the room, I broke down in tears. I just felt so awful. Perhaps it was the pain, perhaps that I was holding it in (to the extent that I could) during the test itself, or perhaps I just needed to open the emotional floodgates through this whole process, and that was an opportune time. Eventually, I composed myself, and fortunately that was it for day 2. Back to the room to rest and relax.

Welcome to Rochester

Rochester is a long trip for me. First, across the Pacific to from Australia to Los Angeles, then to Chicago. Chicago airport is huge, and a long walk in a hurry from one section to another - having come in on a "regular" 737, but the short trip from Chicago to Rochester is on American Eagle, who fly these little 50-odd seater commuter planes to and from small towns all over the USA.

I can tell very quickly that I'm in the midwest: the flight attendant is fiftysomething, with big blond hair, and a smile that would need to be surgically removed. She's from "round these parts", and is based in Chicago and does these little flights back and forth all day. Someone once told me - always be concerned about a veteran private (in the army): if they were any good, then by that age they would either be a general, or dead!

For a small regional airport, it takes quite a while to get my luggage. The shuttle bus takes a bunch of us around the local hotels, and the driver has an old-fashioned courtesy that's refreshing. My hotel is one of several connected via a superb subway system to all of the Mayo clinic and associated hospitals.

next steps

Well, it's been business as usual with the IVIg treatments, and the side effects are more manageable now that I take it easy for a few days each time. Will put up a graph of the results so far in a future post.

However, there is a new development. On a recent overseas trip, I consulted a world expert in diagnosis and specialist referrals. He is not a doctor; rather someone who is renowned for referring people to the right specialist for their specific condition or symptoms. After reviewing my case, he suggested I get in touch with Dr Dyck from the Mayo Clinic, and spoke highly of their diagnostic methodology. This made me wonder if his view was that my diagnosis was incorrect.

Then, I consulted with a spiritual healer. Her advice was that my illness is a lot worse than what we think, and that I should see a doctor in the USA for treatment. Between that and a few other uncanny comments about other matters, I am now very spooked. I'm not an overly superstitous person, however I feel strongly that there are people in the world who have vision/insights to see things that others don't. So my next step is to get in touch with the Mayo and organize something.

next juice?

Well, the most recent set of test results (skeletal x-ray and MRI) are in, and everything does seem to point to MMN. Is this a good thing? Hard to tell. They're ruled out plenty of bad things, and it looks far more like MMN than CIDP. I don't know if one is better or worse than the other, so that doesn't mean a lot.

It's been over a week since I finished the Prednisone, and I have noticed a couple of interesting things. Since finishing, my hands seem to feel a bit better - a bit more freedom of movement. That seems to indicate that the Prednisone had a detrimental effect. However, along with that, the headaches have returned. They are far less intense than a couple of months ago when I had the IVIg treatment, but they are still there. Not severe enough for me for me to be taking something every day, but enough that (a) I notice, and (b) there is no answer as to why they are still there. Perhaps they are less severe because the IVIg is wearing off over time?

So now I play the waiting game. Waiting for my hands to weaken sufficiently that I will embark on the next IVIg juicing. Next time, they will premedicate me with Prednisone, which they think might help with the headaches. No-one really knows; it's a case of trial and error. More and more I feel like I'm the patient on an episode of House. The only differences are that over there in TV-land, he works it out in about 35 minutes, it's all over in 42 minutes, and the total elapsed time is a few days. My episode will being played out over years, and in that context, we've only just begun. In fact, all these medical shows are starting to annoy me. I squirm when they do tests on the patients, especially the ones with needles, and I'm starting to understand far more of the medical terms than the typical viewer.

Perhaps the only good news is that it's been some ten weeks since my first IVIg treatment, and my hands are far better than they were before the treatment. To me, that implies a longer than average cycle between treatments. You might notice that I'm not running back for more in a hurry. It's a fine-tuned balance between a rock and a hard place.

and the results are ...

I really need to learn to adjust my expectations. The spinal tap was supposed to explain/reveal so much about specifically what condition I had, and the reason behind the side effects. Instead, the results are inconclusive, and I am left feeling flat, exhausted (is it the hot weather, the return to work, or a side effect?), and as uncertain as ever.

The protein levels were elevated, but not sufficiently to indicate CIDP over MMN. There was slight inflammation, but not sufficiently to confirm aseptic meningitis. Could be that the meningitis was more clearly indicated if we had done the spinal tap sooner after the initial IVIG treatment (it's been over six weeks), and now we are seeing only a residual inflammation. So, to summarize the test results in lay-speak: "it might be this, but on the other hand, it could be that, and the side effects might have been because of the other".

Bottom line: my neuro is putting me on a short (three week) course of Prednisone in the hope that it might reduce the inflammation, and therefore the headaches. They may also have an effect on the primary condition. And I am left still wondering, and have to pick up some more Panadol - the bulk size *sigh*.

relaxing in the sun

Daily ritual for the last 6 days: wake up and take some pain and nausea meds. That has typically been enough to set me right for the day. There does appear to be some increased strength in my right hand, which is a little encouraging. Today, the headache was there early in the morning, but subsided. Wrist is especially sore today, but I'm not going to bother with medication (yet).

The last few days on holiday in the Sunshine Coast have been quite relaxing. Am especially looking forward to today: the younger kids are all going away on an excursion or being taken care of, so it's spa day for myself and my wife.

Probably the malaise most affecting me at this stage is "over analysis". I'm an analytical person at the best of times, always thinking, and needing to understand what is happening and why. So trying to work out what is a symptom, or a side effect, or a result of getting away from the daily grind, is almost impossible.

Before I started the initial IVIG treatment, I decided to visit a Traditional Chinese medicine (TCM) practitioner for an alternative diagnosis. Even at that stage, the thought of having regular infusions was very unattractive, so having someone else look at the problem before any treatment and give an opinion seemed like a good idea.

The practitioner told me I had an enlarged liver, that I didn't get enough sleep (correct), and that this was partly because I went to bed each night with too many unfinished things on my plate (he was right about a lot of unfinished things). To TCM people, it's about energy flows within the body. He had found a blockage, and before I could even thank him for the diagnosis, he launched into some initial treatment. I didn't go beyond that, because I am determined to try one thing at a time so as to understand what does and doesn't work.

Here is the paradox: I will accept a formal diagnosis from a western doctor based on blood work and diagnosting imaging, despite the fact that they don't know the cause of the condition, don't have a cure, and don't know why or how the treatment works. Yet with the TCM practitioner, I demand to know the link between his diagnosis and the symptoms - needing him to justify himself. It does seem that our western society trusts medical practitioners despite so many unknowns surrounding much of their work.

Today's challenge: forget all about it while I attempt to detox my body in the sauna, melt away in the spa and at the massage table, and immerse myself in a good crime novel. For me, that's an formula that is empirically proven to work.

more uncertainty

Now I'm actually getting scared. After a discussion with the neurology registrar at the hospital where I had the treatment last week, it seems that having a pinkish tinge in the urine isn't a good thing after all, and indicates the presence of blood. With all these damn side effects, it's hard to know what is coming from where any more.

The biggest fear in any diagnosis is ... what if they get it wrong? what if my symptoms are masking some other, more sinister, disorder? The GM1 antibodies are supposed to be a reliable indicator of MMN, but what else could it be? Damn internet! I enjoy watching House, but now I feel like I'm guest star in an episode! As if there wasn't enough uncertainty before. So it's off to my regular doctor for more tests ...

The worst part is that I can't really tell anyone at the moment. My wife is already worried about this, and we are hosting a huge dinner party tonight. If I tell her about this new symptom, she will only worry more and be totally distracted from the event tonight. So, will have to duck out to the doctor quickly and surreptitiously, and wait until later tonight to share this with her.

the waiting game

Well, the headaches have subsided to the point that drugs are either not needed or don't do too much, although my neck has been quite sore for the last few days. My urine has been pink on occassion, which is a little weird. Depending on who you ask, it can take anything from hours to days to weeks for the treatment to help. The internet is a terrible place for medical research - just way too much information. All it does is add to the uncertainty.

Being referred to a neurologist for weakness in the hand was a little scary; it just opened up a world of terrible possible diagnoses. It is interesting to note that the Hippocratic oath actually does not include the phrase "do no harm", which explains why doctors have some very painful tests and procedures disguised by innocuous terms like "nerve conduction study". That's actually medical for "a series of electric shocks through the arm that, if they were any stronger, would cause an involuntary reflex blow to the head of the person administering the test".

Lots of graphs and numbers led to an initial diagnosis of some damage to the radial nerve, possibly a result of some trauma. Because nerves are able to repair themselves, it was just a matter of waiting for this to happen, and the muscle weakness would go away. Unfortunately, after several months this didn't occur, and so we moved to the next battery of tests, starting with the MRI.

MRIs are lots of fun. It's not quite the way they show it on TV - these super magnets make a hell of a racket as they bang away. The old fashioned headsets you used to get on planes are the only thing that works to deliver music when you are inside; no metal is allowed.

That test found the thickening of the radial nerve in my upper arm, which explained the muscle weakness, and indicated this may not be what was first diagnosed. It's fascinating to think that the damage to that nerve in my forearm would cause weakness in my hand and fingers. This led to further blood work and another, quite painful, nerve conduction study, where they upgraded from electric shocks to needles (eeek) inserted into very sensitive parts of my hand to "listen" to the nerves. What is nerve-speak is for "ouch!"?

So, all of that led to the firm diagnosis of multifocal motor neuropathy. Which, in my case, is medical for means: "we know what you have, we don't know where it comes from. We know how to treat it, and think it will work, but don't know why". And so, I wait ...

fully juiced

The term TGIF was most appropriate, and in a way it was relieving to finally finish the initial five days of infusions. It took Michelle three tries to get the needle in (which is already two too many), but knowing this was the last time (for a few weeks, at least) meant there was light at the end of the tunnel. Another woman who was just getting hooked up as I was leaving sat cowering in her chair as her needle was being inserted; so I'm not the only needle phobic who has to deal with regular jabs.

The migraines are still there, and not getting better, and now my neck is sore as well. The pill cocktail does subside the pain, though I'm still left feeling quite awful, and haven't really been able to work for most of the week. Had a bit of a chat with the neuro resident and registrar about the side effects, and what to look out for over the coming days. It seems the particular side effects I have experienced are not very common. It seems this particular branch of medicine is one that almost seems like trial and error. They know what I have (but not where it comes from), and know that in the majority of cases, it responds well to this treatment (but not why). Reassuring, eh?

So, to sum up, a week of my life has all but disappeared, and all I have to show for it are a few holes in my arm, a few DVDs watched, and a nasty headache. Hoping that the headaches will subside and the treatment will start to have an effect, but at the moment, the overwhelming feeling is one of despondency.

second juice

Today's juice was definitely a far less uncomfortable experience, which is encouraging. Perhaps one day soon I won't be sick with the anticipation. Of course, as usual, the expectation is always more than the event itself. "Buy on the rumour; sell on the fact" is the old market adage, and I have seen it enough times that I know it is true.

I think I've had this thing for about 3 years or so; that was when I first started experiencing weakness and pain in my hands. Because I sit at a desk all day and use a computer, the obvious diagnosis was some kind of repetitive strain injury. I made a few changes to the ergonomics of my work environment, and this did help a little. But the muscle weakness continued. It was only some months ago that I finally decided to revisit this, probably prompted by the quite a serious degradation of strength in my hand, and a visit to my local doctor led me to see a neurologist.

They say the juice has quite a rapid effect. Indeed, today I was able to lift my finger for the first time in several years. The pain in my wrist has also reduced. So this is further encouragement that the stuff works. There are headaches, but this is a side effect that is known, and can be dealt with.