For the first time in four months, one night, suddenly, I realized my choreiform movements were gone. When I woke up the next morning, my body felt completely different. That night, I felt a tingling session in my head and legs, as if my brain were healing itself. The next morning, I had a sense of the disease departing from me, and people were even telling me that my “energy” was different. For the first time in several months, I was enjoying my life again.
Since those wonderful two days last week, I have had some mentally rough days, although the chorea and tics continue to be quite mild. Could the IVIG actually be starting to work? I think I’m daring to hope that it is.
So far, this whole healing process has been a lot of ups and downs—perhaps mostly downs for the first month. But every once in a while, I get a really good day or two, and it seems like the good days keep getting better. I’m just hoping that the bad days keep getting less bad until, eventually, a bad day is only what a normal person would think of as a bad day—maybe just feeling a bit tired because I didn’t sleep enough, or something like that.
I just passed the two-month mark since my IVIG treatment in August. I was told it could take as much as 3-6 months before major improvement, so this is a good sign. I still haven’t been able to come off the steroids, but I’m still better off now than I was two months ago on a higher dose. Even though it doesn’t seem like it sometimes, I think I’m finally starting to get better. I have hope now that I really am going to beat PANDAS.