progress, maybe

Well, it's been over a week since I finished my initial IVIG. There does appear to be a slight increase in strength in my right hand, although in the last day or so, there is pain all through the hand. Previously, there was only pain in the wrist.

Having just watched a few episodes of Heroes (among many other sci fi type shows and movies), it reminds me a bit of the scene where the scientist injects himself with the experimental drug, and goes through some instant (and painful) metamorphosis. You often see the "effect" of the drug working its way through his system as it does its stuff.

I have no idea what is going on inside my hand at the moment. Lots of different opinions about how long it takes the IVIG to work. Have discovered a user community for MMN, so it will be nice to learn about the experiences of others, and possibly find out more about what my expectations should be.

The side effects are still there. Headaches appear from time to time (no more accompanying nausea), but seem to have subsided; neck pain is still very much there. I'm not taking much, if anything, to deal with them.

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.

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.

third juice

The positive feeling soon after a juicing tends to fade with the onset of side effects like headaches and nausea. These were quite unpleasant, and remained until today, when I saw a doctor about them, and they gave me a few pills which seemed to help for a few hours. They don't give you any to take home, but were kind enough to recommend something I can buy over the counter. Fortunately, I've never been one to suffer severe headaches, although it did interest me to see that the medication for both headache and nausea is labelled as being for migraine. So, perhaps this is a migraine? Something else to research.

I'm over the hump: three down; just two to go, for this initial batch. Still not looking forward to it. While the infusions only takes 3-4 hours of my day, I'm left feeling like not doing anything at all, except lie down. It's really not a feeling I enjoy. I really hope this fades quickly once the course of treatment is finished, and I can start feeling "normal" again next week.

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.

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?