I was with Kayla when she was given her diagnosis of MS. It was hard to hear and there were tears. What would tomorrow hold? As far as I knew, there had not been anyone in our family history with MS. Where did it come from? Why Kayla?
I checked out every book I could find on MS at the library. Everyone I knew had a story to tell of someone in their family, or someone they knew, with MS.
Kayla has chronic pain and numbness in her feet and legs, mostly the right foot, and sometimes in her hands. She says it’s difficult to describe, but it’s akin to the feeling of frostbite, or a burning. When it’s really bad, I can see the pain in her eyes. I can’t feel her pain, but it hurts my heart. The pain is always there, though more muted at times. She’s an inspiration because she doesn’t let the pain define her life.
Kayla’s neurologist believes tysabri is the best course for her, and she hasn’t had an exacerbation since she started the infusions three years ago. The progression of the disease has slowed, though her MRI’s show the MS is still active. As for me, I’m concerned with the possibility of the brain infection, PML, and all the unknowns of the drug. Ultimately, the decision is Kayla’s. But, I’m her mom and I worry. Originally, Kayla was not to be on tysabri longer than two years, which would increase the risk of PML. I cried when she told me she was going to continue the infusions. I do know that it’s not about me though!
I’m thankful that Kayla’s MS was diagnosed early and that she has a good neurologist. Kayla’s tomorrows are very promising!
Thursday, December 9, 2010
Guest Post by my Mom!
My mom has been regularly encouraging me to start being an active presence on this blog, which just hasn't happened yet despite my best intentions. So she took it a step further by writing a guest post! Hopefully her jump start will serve as some inspiration for me to start posting regularly. My mom has always been my biggest supporter and I know my MS has had a major influence on her life as well, so I'm thrilled to share with you a bit of her perspective here: