Jaded by the failure of so many MS drugs, I have struggled to be optimistic about any. A few years ago, I was encouraged by Ocrevus, the first drug ever developed for progressive MS. KING 5 News even interviewed me about it. It didn’t work for me.
The one MS drug that ever worked was Tysabri. I took it back in DC for eight years.
My then-doctor took me off Tysabri. She was worried about what it might do after eight years, fearful that it could cause the deadly infection PML (Progressive Multifocal Lukoencepolopathy). I had no progression or lesions during that entire time. She was hopeful that new drugs like the brand-new oral drug Techfidera would pick up where Tysabri left off. None did.
After she ended Tysabri, wave after wave of new symptoms trampled me. I went from walking with a cane to struggling with a walker and then fulltime in a wheelchair, with terrible burning pain below my knees in the evenings.
Now having completed my first two monthly doses of Tysabri, supporters are remarking on my clarity of speech and writing. Many of your kind comments on the last blog post said that it was the best-ever. I recently reclined my wheelchair and pushed myself up six inches with no assistance.
In four months, an MRI will show whether Tysabri has affected the inflammation attacking my brain for more than two years.
It takes no imagination or effort to observe this positive reality. Worries about the upcoming MRI results retreat.
In my work on mindfulness, I open to what arises: sounds, sensations—including pain—and then, of course, thoughts. They arrive like waves on the ocean. Occasional waves of reality-based optimism are appearing.