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 :(

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.

Plenty Happening

It's been a while since I've posted, and it's been an interesting few months. Since coming back from Mayo, we decided to reduce the dosage, so I've been on 33g (just one day) every 3.5 weeks. The other thing we tried was to switch to Octagam instead of Intragram P (an Australian product) in an attempt to test whether this would make any difference to side effects.

The usual side effects still seem to be happening - headaches and fluey feeling. Last treatment - about 10 days ago, there was nausea as well, so it wasn't very pleasant! While the strength tests I use seem to indicate the usual small spike after receiving treatment, something else has been happening over the last few weeks.

My right hand has become somewhat inflamed - the middle finger in particular. There is a noticeable weakness and fatigue in the hand when I use it, so much so that it gets quite sore by the end of a work day. After going for a power walk, my entire right hand feels very bloated. I have switched mouse hands to my left in an attempt to use the right hand less - that has been a huge challenge! My general practitioner sent me for some blood tests, and I see my neuro next week, so it will good to get some professional feedback and hopefully some answers.

Reflecting on Mayo

Things have settled down now. I had just a single day of treatment on Monday (half the usual dose) with the usual side effects, and rest period to get over it.

Looking back on my visit to the Mayo Clinic, I came away feeling perhaps it was a bit of a waste. It's strange - you go to a place like that with an expectation that they will find something very bad, and have the ability to fix it. Then after all the the effort, pain, and expense, and all they do is confirm something you already know! A tinge of disappointment. Yes, relief as well that there is nothing really serious or terminal. Together with that, is the sinking feeling that now I really do have to move to acceptance of my condition of multifocal motor neuropathy, and plan to deal with it for the rest of my life.

From a medical perspective, the Mayo is very impressive. The trip and the outcome has helped me reflect on the level of care I have been receiving until now. If the Mayo ranks a 10/10, then I would say that the medical resources and care available here in Melbourne, Australia probably ranks about 8/10 (my neurologist concurs with my assessment, although he would hardly be one to argue such a point). I am very fortunate to have access to excellent doctors (my neurologist did time at Mayo, and lots of other Australian doctors do same), and the public health system means that my IVIg is free.

On that basis, someone like me going to the Mayo for an assessment is only of moderately incremental value. If I lived in a small town in the US that didn't have such resources, I would have grounds to be less trustful of my diagnosis, and therefore a trip to a major centre would be easier to justify.

Of course this is all with 20/20 hindsight. Still, yet another useful lesson. Time (and quite a long time) will tell if they treatment approach suggested at the Mayo proves to be valuable.

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.

Review with The Man

My last day at Mayo started with the onset of a headache. The little brochure they gave me said that one in three people who have a lumbar puncture experience a headache afterwards. I'm now back in Australia, but was unfortunately unable to leave the headache in the US! It's a dull, throbbing pain, punctuated by bursts of intensity whenever I laugh, cough, or suddenly move my head. What I probably need is some solid R&R time to get over the whole experience.

But back to day 5: I finally get to meet Dr Dyck for a review of all of the test results, and recommendations moving forward. He takes a bit of a history, reviews the documentation, discusses it with the other neurologist present, and confirms the original diagnosis of multifocal motor neuropathy, with conduction blocks in right and left arms. I guess the good news is that there is nothing more insidious there, and I am satisfied that enough diagnosis work has been done to find anything else that could be wrong with me. I explain the side effects that I have experienced, and also show him my hand strength measurement apparatus, and he is suitably impressed. He must be 70-odd, and his finger is able to support over 650g!

As regards dealing with the main condition, he has a few interesting insights. Considering the half-life of IVIg being ten days (contrary to what I've seen online), he is more in favour of smaller doses fortnightly rather than a bigger dose monthly.

There are two schools of thought regarding the use of IVIg for MMN: treat aggressively early on to limit the permanent degradation in hand strength, or delay/limit treatment until the condition gets more severe, because the stuff will eventually stop working. His view is more aligned with the latter: that I should take only as much of the "juice" as is needed to ensure my hand weakness doesn't severely impact my life.

It has been nearly eight weeks since my last juicing, and my hand strength has held up reasonably well - the pain that I was expecting as a result of weakness has not appeared. So I'm thinking that maybe a reduced rate might be in order. He also suggests that it's worth considering different brands of IVIg as they are produced differently, and some may be more effective than others.

He concludes with some general comments about auto-immune disorders: get plenty of sleep (I wish!), eat well, exercise, etc, ... and choose life! He asks me where that phrase comes from, and I recognize it from Deuteronomy (30:19). The quote resonates strongly with me, and I've been thinking since that time about how important my attitude is to all of this. The trip has left me with plenty to consider, as much in terms of treatment as as how to adjust my lifestyle. More once the headache subsides.

So many tests, so little time

Day 3: Spent a few hours in the morning trying to move one of the tests forward, because it wasn't scheduled until the following week. While they give you a schedule, you are actually able to sit and wait for any of the tests on 'standby'. I am very surprised to find out they get a reasonable number of 'no shows' for appointments. Anyway, they are unable to help me, and eventually they take my mobile number and promise to call if they get an opening.

Later that day is the MRI - the appointment was a "double header", and was meant to go for two hours. After filling in the expansive questionnaire, they take me to get an IV put in because this will include contrast. Now I understand why they are asking me about kidney function as well as the usual questions about metal bits inside my body. Of course I get quesy but the IV goes in easily. Turns out the needle is made of plastic (it has to be, because you can't have any metal bits in the MRI).

Usually, I'm pretty good at lying flat and doing nothing for an extended period. First part is the right arm, and for that I'm lying flat on my back with the arm at my side. You really do lose a sense of time lying in that huge thing. Every now and then they say "this one will be 3 minutes" and off it goes, clicking and whirring and pounding away. Eventually, they slide me out and we do the next set with my left arm wedged up - have done this before and it's quite uncomfortable. Then they push some contrast material in through the IV, and do a few more in that position. Finally, I come out, and go back to lying flat and they do the right arm a few more times now that the contrast material is in. Turns out I was in there for over three hours of this stuff.

Day 4: I had managed to switch my lumbar puncture to Thursday instead of Friday, although when I get there, it turns out I was just switched to standby. So that's what I do, and eventually they call me. They don't do this under x-ray; just in a little treatment room with me lying on my side. It is an unpleasant experience, and along the way the needle nicks a nerve somewhere, and I very briefly feel a sharp pain down one leg. After it's over, I lie flat for a while, so as to let that little hole in my back close.

In between this and my next appointment, I manage to fit in a massage at the local spa. Nice to see there are some people in Rochester who make me feel good!

Later that afternoon is the last one on the list: a sensory test. This is the one I had kept trying to bring forward; must be popular! While I sit there, the operator tests my ability to feel various things: light touch, cold and heat on my nails, hands, and feet. This one is quite innocuous, and goes for about an hour.

Finally, all the tests are complete. All that's left is the review.

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.

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.

Reflecting on a New Year

Having celebrated Jewish New Year last week, and on the eve of the holiest day in the Jewish calendar, Yom Kippur, I have been relfecting on the last twelve months in my life in the context of my condition. I read somewhere, that someone was asked: "how did your Jewish New Year go?", and he replied: "I'll tell you at the end of the year". We hope and pray for a good year, and that we be inscribed and sealed in the "good book", however the only test of this is time.

On that basis, my Jewish New Year of 2008 didn't go particularly well. Twelve months ago, I could not have imagined myself at this point. My life at present is burdened with uncertainty about the future, regarding my medical condition and several other major issues. The emotions are sitting at the surface just about to burst forth in uncontrollable tears (and they do, every now and then). They need an outlet, and this is a great time of year for that. Hopefully I can look back in another twelve months at a more positive year on all fronts!

I've started planning my trip to the Mayo in November. The doctor has recommended that I stay off the IVIg juice so he can see me without its influence. That means I will be without it for about eight weeks instead of the usual four. The thought of that doesn't make me feel very excited. On the other hand, I want this process to uncover some new insights, so I have to give it every chance of that.

too much juice?

Well, so far, this latest experiment with my medication hasn't been a roaring success. On the first day, the neck soreness was quite severe, accompanied by a sensitivity to light, and that general awfulness feeling (my wife says "you look green"). Fortunately, not much in the way of a headache. On the second day, it wasn't quite as bad. I had the weekend to rest and take it easy, although this morning I woke up with an awful headache. This was probably because of the howling winds that didn't allow me to get the decent night's sleep that I need.

It's quite evident that the juice and I just don't get on well. What I can't stand is that the nasty side effects are very quick to show up, but the positive effects of the treatment usually don't kick in for about a week. That makes me very despondent every time I go in for some juicing. Especially when I wake up in the morning feeling like crap and read puff pieces in the newspaper about little Michael and how IVIg revs him up just like a double espresso. I wish the stuff worked as well for me!

even more juice

Blogger has been playing up lately - very annoying!


I've been tracking my hand strength for the last few months, using a "rig" consisting of a paper cup with some string attached, and a series of scientific weights. A couple of times a week, I measure how much weight each of my fingers can hold up. As you can see from the pretty picture, there are spikes, and these roughly coincide with the IVIg treatments - they seem to have their maximum effect around a week after each treatment.



The legend is a little small - the blue line at the bottom is my right index finger. There are a few interesting things going on here. Firstly, despite the treatment, the best it gets is for my right finger to have not much more than 20% (compared to the left, and the other fingers). I have found this quite disappointing. The spikes are also quite modest. Finally, the pinkie (black) is one of the stronger fingers, and this is uncommon in MMN.


So given that we are reasonably on top of the side effects, my neuro has decided to up the juice. We had been doing 0.78 g/Kg over two days as a maintenance dose, which is already at the high end. The next dose (over the next two days) will be 1.06 g/Kg - an increase of 36% or an extra hour and twenty minutes connected to the juice machine (can you tell I'm a numbers guy?).

I really shouldn't have written about this - all it's done is make me think about how long the treatment is and what I will do. Lately, I've been relaxing more during the infusions - nodding off for a nap here and there because of the phenergan. All of that certainly seems to have helped minimize the side effects. Will have to line up some extra videos to watch or maybe a book (although reading one-handed while lying in a bed is a little difficult).


And in other news, Mayo have responded in the affirmative, and I'm booked in for November. More about that in another post.

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.

Rest is the key

It's been a couple of treatments since my last posting, and things appear to be on the up. I have formed the view that while steroids reduce side effects, they have an adverse effect on the primary condition itself. Having put in a measurement system for the strength in my fingers, I was very disappointed by the improvement in course I had five weeks ago.

So in this last one, we just used anti-histamines (phenergan), anti-inflammatories (nurofen), and regular pain killers (panadol), and these did a reasonable job of reducing the side effects. The most important thing I have learnt from the last two treatment courses is the value of rest! On each occassion I just went to bed and relaxed for 2-3 days, and that was more effective than any drug.

Of course, I would much rather pop a pill (or ten) than have to take 2-3 days off each month. But alas, it is now clear to me that lifestyle changes are required, and one is just to take it easy, and reduce the pace of my life; particular around treatment time.

This last treatment was after a gap of just one month, and the strength in my index finger is the best it has been for around six weeks. That part is very encouraging. Because of some travel plans, my next treatment will be after just a three-week gap, so I'm hoping that will act as an extra booster, and I can revert to a monthly schedule that is more pro-active with respect to the strength in my fingers.

I'm also now exploring some complementary medicine as a way of dealing with some of the limitations of western medicine, particularly relating to the side effects if IVIg. More to follow in future posts ...