Jason’s MS Blog

A return to the blog

July 16th, 2010

It has been over a year since I last posted , and although I have thought about blogging a number of times, I never quite got to it – until today. Why? (Or why not?) Well, it has been a difficult year since I got the stem cells, and I have been meaning to chronicle it in brief, so here goes. After recovering from the trip itself, I went to a math conference in Ottawa at the end of May. This was great in many ways, not the least of which it forced me to do a lot more walking han I had been, which started me on an intense month of June doing quite a bit of walking almost every day. However, it all came crashing down at the end of June when I got an infection in my elbow. It required IV antibiotics for 5 days to contain and kept me in bed for 10 days unable to move due to a fever which kept me completely incapacitated. I don’t know why the infection happened – whether it had something to do with the my immune system having been compromised by the stem cell treatments, or the overexerrtion of the previous month, or if it was just bad luck. But, when I asked her, Dr. Hong told me that the stem cell treatments should only have helped my immune system. In any case, it took me until August to get much of my strength back; and then the next blow came. After seeing a nurse at the MS clinic, who suggested I try self-catheterization after discoverring that I was retaining about 400 ml of urine all the time, I really did try it, and promptly got an acute UTI (urinary tract infection). This put me on antibiotics for another 10 days. Once over that, the UTI recurred about a month later, although less severely, and I had to go on another course of antibiotics to take care of it. Then the fun really began. I got the idea in my head to try megadoses of vitamin D as a therapy. I was convinced  this was a good idea because for once both Dr. Johnson (my MD) and Dr. Chu (my acupuncturist) agreed that it might be helpful. So I took 50,000 IU of vitamin D per day for two weeks. It backfired. My stomach became very sensitive, and my immune system was thrown way off balance. Oh, and on top of that it sapped my strength. Dr. Chu thought it would take about a month for my system to recover. A few weeks later, though,  just to add to the fun, I managed to pick the perfect time to have my immune system shut down: swine flu season! About this time there was a positive, though. My Dad and I went to a lecture by Dr. Terry Wahls who had in two years gone from being in a power wheelchair with secondary progressive MS to riding her bike 5 miles a day through a combination of intensive nutrition and neuromuscular stimulation. To say I was inspired would be a vast understatement! And as an footnote, Dr. Ashton Embrry, who had organized the talk through his charity Direct-MS, had included a summary of a new treatment for MS called CCSVI in the handout he gave to all attendees. Enough for today, though.

Entry Filed under: ms