Chronicles of Life with Multiple Sclerosis
I just want to thank everyone for their advice, support, thoughts, and just reading this darn blog. I can’t tell you how helpful its been for me to write about this and touch base with so many of you that are (unfortunately) going through so much of the same crap.
So after reading and writing and posting I had my appointment today. It wasn’t so bad. I’m pretty exhausted and achey today so I won’t go on the rant about how amazing it is to have a great doctor that you respect and you feel respects you. Its only been a couple months but the differences is beyond words. Anyway, I decided that if I’m sticking to injections I’m going to stay on the copaxone since the others are generally intolerable to me (side effects wise) but that this will just be until I complete all the testing for the other medication options. I’m almost totally leaning towards Tysabri after reading, talking to everyone, and talking to my neuro today. That is, we both agree switching to tysabri is a great plan…. as long as I test negative for the JC virus (which having increases the risk of brain infection a TON statistically speaking ..hahha I like to make the former statistician in me twitch). Anyway, If I test positive for the virus (which is not unusual) I am not at a critical mass quite yet that its worth risking a brain infection. In that case I’ll be taking my chances with Gylenia. I had my blood drawn and we’ll find out 3 weeks from now.
In other news my usual neuro exam showed some dramatic weakness in my right side (arm especially) which oddly enough I didn’t list as a major new issue for me. Guess all the aches and shock pain and muscle cramping made that seem unimportant. So due to that weakness, and the increase in pain, I’m scheduled for another MRI in Mid November (had one in sept.) and my doc has put me on Baclofen for the muscle/joint/ pain. I’m still reading about it but it seems to be a muscle relaxant of sorts. Not thrilled about more meds but that really pales in comparison to the joy at potentially getting some relif from this pain and from having a doctor actually listen to me describe my symptoms and not look at me like I’m nuts, making it up, or whatever and actually trying to help!
So following all that I went to the RMV to get my placard only to realize after an hour of waiting (cause I’m slow) that I was supposed to mail it in. So they did that for me and I came home and collapsed on the couch. So now I’m gonna try to make that collapse some sort of sleep hah. Wanted to thank you all again. You rule! <3