What a day!
Yesterday was quite nice. Went to town a bit, and generally felt quite good. Didn't get to swim, though. We did go down the road to get a squizz at McNaught's Comet at twilight. Unfortunately there was a bit of, shall we say, marital misunderstanding on the way. I felt upset enough to have a sudden onslaught of exacerbated ms-symptoms, and suddenly had no interest in seeing the bloody comet. Couldn't spot the damn thing, anyway, so it was just as well.
Today, we left for Jo'burg just after 7:00. Got to the clinic just in time for my appointment. Wasted a whole lot of energy galloping around the parking-lot, but eventually we found the right place.
The neurologist is a real sweetie. I like him a lot, and feel comfortable around him, which is more than I can say about some
other neurologists. We discussed the trials for a while, and I had to sign the consent forms. Lots of paperwork. They even have to do a HIV test, as that is something that may intefere with the trials of an immune system disease.
Then the (many) tests commenced.
At least the doc has no doubt that I have relapsing-remitting ms, which is good news. Both for the trials and for me, personally.
Then they did an ECG, to test my heart, which is normal. Had to lift my shirt so he could attach a whole lot of little electrode thingies to my chest *blush*. I must be getting older though because this didn't bother me much. In fact, I was quite pleased by how my bare stomach looked. As well it should, after two weeks of dedicated swimming. Anyway, heart was fine.
Then he looked into my eyes, and said my poor optic nerve is very pale. It's supposed to be a healthy red. Still, no surprises there.
Then he drew four vials of blood. Once again, my veins were perky and did me proud.
Then a colleague of my new neuro was called in to run the disability tests. Can't remember the acronym.
I tell you, I was performing like a seal. Doing my very best.
First I had to put nine little wooden rods into a wooden block with nine corresponding holes in it. First with the right hand then with the left. It went okay. Frankly, much easier than buttoning my shirt or putting my earrings on.
Then I had to do the cognitive ability test. They need a baseline to compare future tests with, while on the trials, to see if there is deterioration or improvement. Fortunately, I don't have cognitive troubles. Very thankful for that.
Anyway, he introduced the test by saying, "This is hard". Immediately, I felt stressed. I know I don't have cognitive dysfunction, but these guys didn't.
The test simultaneously tests mental arithmetic and memory. He plays a cd, where a voice gives you a list of numbers to add up. But there's a twist. After you've added the first two digits, and given the answer, the voice repeats another number, and you have to remember what the second number of the previous sum was, and add that to the new one. And so on. You get a couple of seconds between each number. I got to have a little trial run, where the neuro and I gave the answers together. On the third number, he made a mistake, and we laughed. Then I got to do it for real. The numbers kept coming for about a minute or two, maybe more. It gets confusing after a while. When the cd was finished, he looked up from his little sheet and said, "Well done. 100%."
I was relieved. At least I didn't screw up.
"Normally, people don't get past the third number," he added.
Well, I was competing with people who had cognitive malfunction as a symptom, so I didn't think too much of it. Until he added, "Including the doctors."
When the other neurologist came back, he said to him, "Hah! She scored better than you did on this test!"
I'd be lying if I said I wasn't suitably chuffed about that. And I know I'm blowing my own horn, but I have to. When the time came for me to hop on one leg, I couldn't do it. Even a young child can do that! I also couldn't walk heel-toe in a straight line, or stand up straight when I closed my eyes. So allow me my moment of glory in the cognitive test, lol.
Then I had to walk 25m as fast as I could, which was 5 seconds. I was quite amazed. Back in the examing room, I had to do the run-of-the-mill tests for sensory disabilty and muscle weakness. This including him bending my toes up or down, and me having to say which direction he was doing it with my eyes closed. My poor toes are so numb I couldn't even get one right. I also couldn't detect the vibration of the tuning-fork thingy he kept prodding me with. But, like I said, no surprises. Eye-test went okay, not brilliant, and that with my glasses on.
Ended up on a four on the disability scale which pleased me. Remember, I needed to be 5.5 or lower to be on the trials.
Then he asked me some personal questions about my bladder function (not good), whether I have depression as a symptom (I don't) and my sexual function. (Relax, I won't discuss that. Except to say that it didn't embarass me at all, I must be getting quite mature :-)
Then it was off to do the lung-function test where I met a lovely, lovely nurse called Mandy. The lung-function results came back a bit low. Sur[rise, surprise. Not.
But not low-enough to exclude me from the trials. The lung specialist (or whatever they're called) was very nice, too. He'll be monitoring my reactions when I start taking the drugs, as that is one of the presenting side-effects during the inital dose.
Next, it was off to have my brain scanned by MRI. This went all right. I was only in the machine for about 40 minutes, because they only wanted a scan of the brain, not of the spinal chord. I was cautioned to remain
very still. Which was hard as my eye started itching ferociously while I was in there, but I managed to ignore it. Then they injected the contast dye in and back I went for the second scan.
I was very disappointed, as neither my doctor nor myself got to have a look at them. The cd was shipped straight off to Switzerland to be analysed. So much for my free MRI scan. Doesn't help me at all.
I finished off the day, with some chest x-rays, which fortunately were short and sweet, and then Michael and I ate at a fantasic coffee shop at the hospital. It's part of the popular
Wiesenhof chain. I had a lovely spinach, mushroom and feta wrap and a naughty slice of lemon meringue pie. But hell, I needed it after all those tests.
Michael was a real darling. My waiting-room man, I call him. He just waited and waited for me the whole day. Bless him.
My chances of getting on the actual drug are higher than I thought - 66%. The three arms of the trials are the placebos and then two categories of the drug, in different potencies. I'm just hoping for the best.
Now I just have to go for an Evoked Potential test next Friday, and then I will hear in about two weeks whether I've been accepted on the trials or not.
Of course, now that there is a possibilty of me going on them, I'm suddenly feeling
much better. I walked around brilliantly the whole day without a single exacerbation. Either I'm really psychological, or the ion detox/ homoeopathy/ exercise is working for me!
The trip home was strange and wonderful. First, we sat in a traffic jam for an hour, which was neither strange nor wonderful.
But on the second leg of the trip, we had quite an experience. On a long stretch of road close to home, we watched the most beautiful twilight spectacle unfold.
Ahead of us, there were clouds overhead of a cerulean blue sky, interspersed with shades of baby pink and mauve.
To our left and our right the sky was a dark indigo, with black clouds. It was pouring with rain on either side of us, but none where we were driving. It was like going through a surreal tunnel, in a parallel universe. We were flanked by a long line of bluegum (eucalyptus) trees on the left, and kopjies on the right. But the most magnificent of it all, was the display of lightning. None where we were, but clearly visible on either side of us. Totally awa-inspiring.
Add to this, one of our favourite cd's playing on the radio, and it was just too magical for words. Michael and I share a huge passion for music. It was one of the (many) things that brought us together. I wish I had a photo of tonight.
When we got home, there wasn't a cloud in the sky, and it looked just like Vincent van Gogh's
Starry, starry night. Breathtaking.
After all the activity today, my back and hips are feeling pretty much okay. Man, but this swimming lark of mine is paying
huge dividends!
Better that I wrap up this post before it starts to rival Tolstoy's
War and Peace in length.
I'll just leave you with this rather interesting link that I poached off Donna's blog:
MS-simulator.