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.
Sunday, March 29, 2009
Friday, March 20, 2009
next juice ...
My hand strength has degraded a fair bit in the last week, and with the protracted diagnosis phase all but complete (just a review discussion with my neurologist next week), I decided that it was finally time for my second IVIg treatment. I ought to be pleased because it has been three months since the first one, which indicates a very slow progression, but instead I'm feeling flat and depressed about it.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Approaching a second treatment course is very different from the first. While I am unable to get excited or enthusiastic about any medical procedure involving a close relationship with a needle, at least with the first treatment, I anticipated a successful outcome, and was not particularly concerned about side effects.
This time around, my anticipation is very different. I think the treatment will result in improvement to my hand strength, but the side effects are a concern, mostly because there hasn't been a satisfactory explanation as to why the headaches went on so long. This time, I am going to premedicate with Prednisone, which should help, but as always, the operative word is "should".
But the other thing that weighs down on me is the long-term future. By embarking on this a second time, I'm accepting it as a part of my life - that regular IVIg "juicings" will now be established as a regular part of my diary. While I was already advised that there is no cure, and that this is just about the only treatment, this is the moment when its permanence is truly felt.
Friday, March 6, 2009
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.
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.
Tuesday, February 24, 2009
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.
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.
Thursday, February 12, 2009
'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.
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.
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