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.
Subscribe to:
Posts (Atom)