Decision, Decisions, Decisions
A couple of weeks ago, I was faced with a most difficult dilema. In fact, it was the hardest decision I've ever had to make. That being, which MS medication should I choose? At the time I was on Gilenya, but during a routine visit with my neurologist, we talked about getting on the Tysabri wagon again. Initially, I was all for it. He told me about a clinical study to see if I had the antibody for PML (rare but very gruesome brain disease, which is described as most often fatal and if you do survive, then you might wish you were dead). If the test proved to be positive, then the risk of getting PML significantly increases. If I chose Tysabri, he explained that my present odds of getting PML would already increase from 1 in 1000 (when I initially began the medication), to around 1 in 100, because the longer a person is on the drug, then the greater the risk. Unfortunately,the results from the blood test administered when I entered the clinical study turned out that I did have the antibody in my system, which further increased my chances for getting PML. I was told that app. 38% of people do not have this antibody and therefore have no chance of contracting the disease. Because of me having the antibody, I figured my chances increased by 38%, dropping the odds to app. 1 in 62. I was much more comfortable with the 1 in 100 odds, but the further drop bothered me, in addition to the fact that the longer a person continued to use the medication,, then the odds increased even further. It is recommended that a person stop the Tysabri infusions after two years (I was scheduled for infusion number 36 when I swithched to Gilenya). Therin the dilema, as I knew that Tysabri had been so very good to me, what to do? I realized that the final choice was mine and mine alone. During the two weeks prior to my final decision, I went back and forth several times, both firmly committing myself to beginning Tysabri again, and then doing a full 180 and deciding to stay with Gilenya. I've never been in a spot like this before, and hope I never am again. I did talk to family members and two others who are close, asking for opinions, which came up exactly divided. Wanda knew what I was going through and left the decision entirely up to me. After much deliberation and prayer, in the end, I decided to stay with Gilenya - and not look back, as I don't want to be constantly wondering, 'What If?'.
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