Part one – the neuro appointment.
We got reasonably lucky with the traffic on Tuesday, enroute to Jo’burg. Sallied into the doctor’s office at ten minutes to ten, for the 10:00 appointment.
Novartis brought out an update of trial information that I had to sign, regarding the dangers of contracting chicken pox (which is derived from the herpes virus) while on the trial medicine. I didn’t actually read through it all, just asked the doc to give me a quick brief, but I gather it was to do with the poor trials patient who died after contracting chicken pox, just after she’d treated a relapse with IV cortisone.
Then I had to have an ECG in the extremely chilly room. I think my goosepimples had goosepimples.
Some blood was drawn from my arm – same old, same old.
And I got the doc to write me out a prescription for something that will calm my bladder down. It’s really getting to be too much, this running up and down to a loo the whole time. The thing is, now that I have regained some of my independence, and am able to drive around again, it is bothering me that I have to lurch from public restroom to public restroom on my travels. Not fun, and quite stressful. I won’t bother trying to explain this to anyone who doesn’t have an MS-bladder, but those of you that have it will know very well what I’m on about.
I then had to convince my neuro that I need to treat with a gram of cortisone again. He looked doubtful, but when I rattled off all the symptoms of the optic neuritis that has been plaguing me again, he agreed that I better treat it. It was actually quite funny. I think i’ve trained him well, because he didn’t even put up a fight about the dosage. In fact, when I asked his opinion on dosage, he gave me a look that said, “well, you’ll do as you please whatever I say.” He didn’t say it though. Instead, he said, “well, the 1g seems to work well for you.”
It was somewhat of a triumphant moment. It’s quite unheard of to treat an MS attack with only a gram, but I’ve been experimenting with it for two years now, and find it to have the exact same effect on me as the 5g dosage. It’s rather hard to convince the doctors, though. But they seem to be coming around. As the saying goes: the proof is in the pudding.
I read a quote in a magazine the other day. I can’t remember it properly, but the gist of it was that we should all take a vested interest in our own healthcare, and not just hand it all over to the doctor with implicit trust. They are also just human beings. And who knows your body better than yourself? It should be a matter of teamwork. We enlist the doctors help, but that doesn’t mean that we can totally hand over the reins of our health to him/ her.
At this stage, the second neurologist came in and took over. The trials are double-blind, if you’ll recall. I then had to run the gamut of the EDSS and functional composite tests, which went better than ever before. The memory stuff went well and so did the placing of wooden pegs in holes. I could hop ten times on each foot (first time I’ve been able to do this). I could balance with my eyes closed and walk toe-heel, although both were a bit wobbly. Still, no matter, I think it’s amazing that I can do it at all. The best part was when he put that vibrating tuning fork thingy on my feet and I could feel it in both of them. Now that is a little miracle and I’m particularly excited about it. If my feet can start regaining feeling then I can start hoping that I will make a complete recovery! Actually, the doctor mentioned that the trial meds seem to be facilitating remyelination. That is extraordinarily good news, and will be cause for celebration by MS-ers everywhere.
The doc then had to tally all the scores and my score on the EDSS is now 3.5. There aren’t words to describe how pleased I am about that. It has been a goal of mine to drop below 4, something to aspire to. I wonder if I can set my sights to an even 3 now?