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.

The dread

It happens every time. I go in for juicing, then set the date for the next one and work my diary around that. As the date approaches, I am filled with dread that won't go away. I hate the juicings. I hate the needles. Most of all I hate the side effects that always happen. But I have no choice; I have to just push myself and do it.

Had to have a couple of blood tests in the last two weeks. Those are relatively easy to procrastinate by a few days, but eventually I have to do them. They actually weren't so bad - good operators who do the small talk to distract me as I stare up at the ceiling. And afterwards, it doesn't seem as bad as the anticipation warranted. But that doesn't reduce it at all.

I have to consciously push out those feelings of dread as the juicing day approaches. I have my little rituals: go in to the office for a quiet cup of tea before taking a taxi to the hospital. Take it easy afterwards and usually book a massage for the afternoon, and reserve the next day or so as rest. Does it help? Who knows. Does it reduce my anxiety and dread? Sadly, no.

So off we go again tomorrow.

Blood Patch

With apologies to Neil Young, it's a case of out of the arm, and into the back. That's probably enough of the song lyric mash-ups too. The blood patch is a procedure where they draw some blood out of your arm, and inject it into the spot where they previously did the lumbar puncture (or epidural block, or whatever). The blood congeals, and closes up the hole in the dura and thus stops the CSF leak. That's what is supposed to happen, and the good news is that it worked! The headache subsided after a short time and have all but gone. I've been resting all weekend, and looking forward (not!) to another infusion on Monday.

I found the protocol differences between Australian hospitals and the Mayo clinic to be quite interesting. At the Mayo, lumbar punctures for the purpose of extracting some CSF are mostly done by a technician without the aid of imaging, and they only require you to rest for 30 minutes following the procedure. When I had mine done earlier this year, they did it under x-ray to make sure they found the right spot. It could be my neuro requested that because he knows how much I hate needles, and to make the experience less uncomfortable. The other thing they do here is make you lie flat for 2-4 hours afterwards, to ensure the hole closes, and minimize risk of a CSF leak.

This might just mean that my Mayo Clinic experience is finally over, some days after my return. Have been reflecting on the whole thing, and will post about that shortly.

The tap that keeps on tapping

With apologies to Cyndi Lauper, there's a hole in my back that comes all the way from Rochester. The headache that I've had since last Friday is most likely a result of a CSF leak. This is a side effect of the lumbar puncture I had at the Mayo Clinic, where they stuck a hole in my back to draw out cerebro-spinal fluid, and the hole has not properly closed.

So what's the solution? Poke my back again, and this time inject some of my own blood which will help close the hole. I'm booked into go to shortly to have this procedure done.

This is really getting to me. I agonized as to whether to just keep resting and hope that the hole closed on its own, or to have another uncomfortable procedure to close it, and decided this morning to take this route. It should give me a little more certaintly that the headache will stop once and for all.

Of course I also have to book in for more IVIg juice, and have decided with my neuro to just do one day (instead of the usual two), and do that on Monday after a weekend of rest.

Mayo on my mind

Leaving for an assessment at the Mayo clinic in a week, and needless to say it's been on my mind a fair bit. I have no idea what to expect of the process, let alone the outcome. House used to be one of my favourite shows, but lately I cringe at all the poking and prodding (mostly the poking), and now wonder if I am about to become the "special guest star" on an episode.

I didn't have my scheduled treatment a week ago as suggested by the doctor at the Mayo. Definitely didn't miss the experience! The finger strength hasn't degraded quite too badly, which is good.

A few weeks ago, a couple of fingers on my right hand felt sore and slightly inflamed. It felt muscular, but I didn't hurt them, and I have no idea where it came from. It could be anything, but of course my first thought is that it is a new symptom. My neuro acknowledged that there is slight inflammation, but said it isn't necessarily linked. In the meantime, the symptom remains, and hasn't gotten better or worse.

juicing again

Walked in this morning for the third and final day of this course of IVIg, and Michelle (Jamie has left the position, so Michelle is running the "juice bar" while they find a replacement) greets me with a friendly "How are you?"

"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.

I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.

So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.

Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?

miscalculation

It seems that with all the extra tests I was having, I took my eye off the main game, and overshot the timing for my second treatment. With my 20:20 hindsight glasses, I probably should've done it several weeks ago. In the meantime, my hand strength has deteriorated quite rapidly in the last two weeks, and is now quite severe. Part of the delay was me not wanting to accept the notion of needing regular treatment; I have to deal with that.

The neurologists say that pain is not something that is associated with MMN. Of course, by this they mean that a nerve conduction block will not cause pain. They may be right about this. However, many people with the condition do experience pain, and I think the reason is quite simple. If your hand does not have strength to support movement in certain directions, and you actually do move it or pur pressure in those areas, then the hand collapses. The radial nerve doesn't seem to be that important when it comes to hand movement - I would think gripping (which is the median nerve) was a far more common action that needed support of motor nerves. But surprise, surprise, there are many movements where my hand and wrist collapse in pain - pulling off a t-shirt, turning a steering wheel, shaking hands, ...

Every time I see my neurologist, or discuss it with my pilates instructor (who is also a physiotherapist), I learn so much about the nervous system and biomechanics. While I'm a person who thirsts for knowledge, and people are impressed when I can explain this stuff to them in simple terms, in the back of my mind, I'm thinking "do I really need to know this?"

Anyway, I've started the premedication before the next treatment tomorrow. Hopefully, I will not experience the side effects of last time. This course is just three days, so that might also reduce the chance of side effects. I really need it to work - having my hand like this just isn't doing it for me.

more tests

Had a review with the Neurologist today, which confirmed that remains some increased strength in my hands after the initial IVIG treatment. It's not back to 100%, but it's better than it was a couple of months ago. Being just the first treatment, we must now sit back and see how long it lasts.


Some questions remain unanswered, like why I still have headaches, and he suspects that I may be suffering from an uncommon side effect of IVIG - aseptic meningitis (aseptic as in not the nasty form of meningitis that is really dangerous, but rather the benign one that gives headaches instead). There is also still some doubt as to whether what I have is MMN or actually CIDP. He expressed this possibility earlier, because of the way certain nerves were affected, and this doubt was also indicated by comments from another doctor who reviewed my case, and asked for further information.

So the obvious thing to do is to stick a needle in my back and extract some fluid - the magical cerebrospinal fluid which contains (we hope) the answers to the mysteries that lurk within my body. The lumbar puncture, or spinal tap, is something I've seen plenty of times on TV in medical dramas. I guess the only good thing about having one is that I won't see it - I'll be facing the other way trying to think of something distracting. Do you think they'll let me listen to my iPod during the test? My fear of needles keeps being tested by all these damn tests and treatments, and is something I will just have to get used to.

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.

first juice

I had my first infusion today. "Juice" is a much nicer term - with connotations of bright coloured juice franchises mixing the best healthy ingredients into a concoction that is gulped down quickly helping the consumer think they are doing something healthy for themselves. My "juice" is immunoglobin - a blood product that will probably make me feel much better. It was delivered to me intravenously for about three hours this morning.

I hate needles. Really hate them. Watching violent movies or TV is fine, but a shot of someone getting an injection, or intravenous drug use, and I squirm like a little child. So today, Jamie introduced me to the term "needle phobia". Great! They invent terms like this so I don't have to consider myself a woos; instead I can proudly wear the badge of having a phobia. This is a phobia I need to overcome, however, for there are plenty more needles and infusions to come.

They have diagnosed me with multifocal motor neuropathy. The language is important; I won't even get started on the medical terms just yet. I won't say "I have ...", because that implies ownership, a connection. Right now, I'm far more comfortable keeping it at a safe distance. "They diagnosed me ...", it's someone's medical opinion, that's all. So it's not "me".

Met Joe today. They can't even diagnose him. He has something similar, but it doesn't seem to be immune mediated. All they know is that the "juice" works. Recently, he had a relapse, and had to increase the frequency to two days every fortnight. He takes it pretty well. Surrounded by other people who are probably far sicker than me, I feel even more of a woos. Do I really have the right to feel sorry for myself? I'm not that sick, after all. Surely I can live with a few needles and getting juiced every month?