In October 2010 I first learned that Gilenya had been approved by the FDA. The first oral treatment for Multiple Sclerosis! So exciting – but I didn’t dare to really believe that I would be switched to it. I knew that insurance would never cover it as long as I was able to use interferon instead, and I had been using Rebif for awhile.
Tysabri is a dream come true for many individuals with Multiple Sclerosis. Personally, I have opted to take Gilenya (for now), but Tysabri was very tempting when I considered my options after it became apparent that Rebif would not work out for me any longer. However, along with Tysabri’s side effects comes one very sinister danger: PML. One patient on Gilenya has been diagnosed with PML, and it can happen to anyone whether or not they have MS. Knowing that medication (especially newer medications) may bring a risk of PML has frightened us all.
I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?
My first year of Multiple Sclerosis went by so quickly.
Year one of my Multiple Sclerosis diagnosis wrapped up about a month ago (I was diagnosed December 10 2008) and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially.
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.