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.

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.

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.

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.

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.

that was spinal tap

A spinal tap, or lumbar puncture, is not a pleasant experience, although in hindsight, like so much of this, the anticipation is far worse than the procedure itself. It was done as a day procedure, and not content for just my wife to accompany me, my mother had to come along as well (despite anything either of us could say to dissuade her). In the waiting area, we spotted what looked like a Greek family accompanying someone who was being admitted. They were a party of six plus the patient, so I guess my "entourage" was relatively small.

The whole thing is quite simple, and done under X-Ray. So I'm lying there on my side, and there's a big X-Ray apparatus that slides over the top of me, and the radiologist is able to see live pictures of exactly where to put the needle in so he gets the right spot. Fortunately, he did it quite well, and it worked first time. Indeed, all the of hospital staff were fantastic - very friendly and helpful. Funny how all of the people in the room put on four-part X-Ray "flak jackets" covering every part of their body while I'm lying there in just a gown.

It takes several minutes for the cerebrospinal fluid to leak out of the hole they make, so I'm making small talk with the guy to pass the time. After it's finished, I suddenly get all sweaty and shaky, but this passes after a few minutes. Perhaps the relief of it being over. I had been anticipating this for several days since my appointment, and it has probably contributed to slightly worse headaches than usual.

Afterwards, I have to lie flat for two hours, just in case the hole in spinal sac containing the fluid does not close properly. Fortunately, this appears to be OK, although my headaches have been worse since the procedure. The information sheet advised of possible headaches after having a lumbar punture - is this a side effect resulting from the procedure to help deal with the side effects? The recent heat wave, and my return to full time work after a break may also been contributors to this. Should get some results in a couple of days, which will hopefully give answers on some burning questions, and perhaps an end to these headaches!

that juiced feeling

It's been a week since the initial juice treatment, and so far, there is no encouraging news. The side effects - headaches, nausea, soreness in my neck - are still there. The first two come and go in waves; the soreness is just there. I've had enough of taking stuff that may or may not help, so am doing my best to stay away from the medication. There is way too much stuff inside me at the moment, and I'm not sure that taking more stuff is adding anything. I've even taken a break from the magnesium supplement that I was taking for cramps in my calves (which is another symptom of MMN). Let's just see what happens over the next few days/weeks and hope for the best.

In the meantime, I'm starting to make contact with other doctors around the world who are specialists in this thing. Haven't really developed an approach moving forward, whether for conventional or alternative treatments. My next review appointment is in four weeks, so by then we should have a reasonable idea if this has worked or not. Tom Petty was definitely right - the waiting is the hardest part.

relieved

Cherries? Could they cause pink urine? I'm resisting the temptation to go nuts and research this particular issue online. The initial test indicated that there is no blood in my urine, so it may well have been something else, either that I ate or that plus whatever drugs I've been taking.

What a roller coaster! Yesterday was genuinely scary for me.

No way am I staying off the cherries or raspberries - they are just way too good at this time of year. What I really can't stand though, is that I now question everything in the context of a possible side effect.

My neck is feeling better each day, and the headaches are mostly gone. Now, it's back to the waiting game and hoping that the treatment starts to have an effect.

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.