If my kids were here today they would have gone nuts! When I woke up this morning and looked out of the window it was snowing. The last time that I saw real snow was back in 2002. My wife and I were on our honeymoon and we went to Niagara Falls on a bus tour. When we woke up in the morning there was a light dusting of snow on the ground and for some reason the tour guide was extremely apologetic about the awful weather. I don't think she really understood that the majority of Aussie tourists on the bus rarely saw snow and we were all running around outside like kids in a toy store having a great time.
I have to say when I looked out the window and saw the snow a childish grin beamed across my face as the thought of listening to the fresh snow crunch under foot and the cold flakes bite against my face seemed quite appealing. However, that feeling did not last long as my felt like they were in roller skates under the fresh snow and someone had replaced the rubber stopper on my walking stick with ball bearings.
Luckily I managed to make it to the hospital unscathed and the first thing I had to do was go up to laboratory services and drop off the two and a half litres of sample that had been requested by the good doctors. It did feel nice not to have to lug around a big bottle of urine any more but I do feel that one thing that Australia could learn from the hospital here is to get some decent bottles for the 24 hour urine tests. The bottle they provided here was so much easier to use and it didn't leak either. The bottles they use in Australia are just like over sized milk containers and inevitably leak around the top.
After the drop off, it was time to see Dr Allen, the neurologist. Again I had the standard form routine followed by the nurse who weighed and measured me and also took my vitals. Still everyone was extremely nice, something some service orientated staff in Australia could learn. After that it was time to see the doctor.
He had already done all the nerve conduction studies, so it was all about taking my history first, doing the manual observations like strength and feeling and then asking me a few questions about the SCT. He really wanted to find out two things for Dr Burt. First, he needed to give his own diagnosis on whether I did in fact have CIDP (a diagnosis with which he concurred) and that I had tried enough treatments to render an SCT necessary. After 12 years of CIDP and the full range of treatments in-between, he was confident I had done enough.
We also talked about my expectations and he said even if the SCT is successful, the degradation in my feet and around my thumbs might be too much to reverse. Unfortunate, but understandable. I am looking at this procedure as worst case scenario stopping the progression of this disease dead in its tracks. Anything more than that is a bonus.
Well, that is about it for me today, until next time, stay well:)
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