on pain and memory

Chronic pain, and muscle soreness or weakness, is a funny thing. When it's there, you know it. You notice it all the time. Whether it can be medicated or not, it's there in the front of your mind. The fact that it's chronic bears down on the mind as well, and compounds the effect. Unlike a sports injury or the occassional headache, knowing that this is something long term with no end in sight magnifies the feeling with an additional, psychological burden.

Then, if a course of treatment is successful, the symptom may just fade. And when it fades, it's almost as if it was never there. When it's absent, it was really hard to remember what the pain or weakness was like when you had it. You quickly rebound to a state of how things ought to be as if that is how it always was, and there was never anything wrong.

But after a while, the effect of the treatment may start to wear off. The weakness or pain emerges from its dormancy quite quickly, in fact much faster than its original appearance, which was a slow progression over perhaps several years. It announces to the body: "I'm baaa-aack", like a long lost friend who was never lost at all; just travelling briefly. And then you realize that the weakness and pain was never gone at all, and that the time you enjoyed when it was absent was the exception, rather than the norm - just a short dream.

This is where I am at now. After nearly two weeks on the course of Prednisone (which is now finished), and nearly two months since my initial IVIG treatment, the hand weakness reappeared almost overnight and pain a few days later. There is also some feeling of weakness in my left hand, which I've been trying to find words to describe, and of course the cramps in my calves (although I think lots of stretching helps for that).

But now, I am in no-man's land. I'm not going to have another "juicing" with IVIG because we're not sure how to deal with the side effects. But if I do nothing, then the hand weakness will just stay and get worse. Am waiting on some more test results. These might shed some light on the whole MMN vs CIDP thing, which might change the preferred treatment. The only certainty for me is what happens if I do nothing.

'roids forward and backward

Have been on the 'roids (that's steroids, as in Prednisone) for a week now, and they do seem to have had an effect. The headaches have subsided, which is good. The main thing I've been watching for are further possible side effects. Sometimes I wonder what proportion of drugs are taken to avoid side effects of other drugs, and how much goes to treat the primary condition.

Still have some more tests next week that might shed some further light on exactly what thing I have. In the meantime, it's a case of "let's try this and see what happens".

In the meantime, I've noticed in the last day that my right finger has reverted a little, and there is less movement. It seems a bit different to what it was a few months ago before any treatment. My wife thinks I'm really good at describing pain and physical sensations. This feels a little different to before - there is a noticeable heaviness and lack of desire to respond to my brain's instructions to lift. There is also the slightest tingle in the finger.

This could be a side effect of the Prednisone (unlikely, I think), or simply because the IVIG treatment was two months ago and is wearing off. Interesting to note the rate of the decay - it took weeks to start working again, but seems to have stopped working relatively quickly. I am far from ready to try another dose of the juice; still have another two weeks to wind down the Prednisone and assess its effects.

And as usual, a change like this has me feeling depressed. I almost felt like going back to bed and staying there all day. Fortunately, there is enough to do at work so here I am.

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*.