As soon as I learned that Stephanie is a mother of seven children, I knew I had to get to know more about this real woman battling MS. She is a part of the Ocrevus trial and I look forward to following her journey.
When were you diagnosed with multiple sclerosis?
“I was diagnosed with multiple sclerosis in August of 2015. After the birth of our sixth child I started feeling quite foggy (which is understandable with nursing, etc.) and later noticed a tingling starting in my hands. This intensified and was later identified as the Lhermitte’s sign–a common symptom with MS.
Next, my back started going numb on one side. Things rolled forward quite quickly from here, and I was soon getting an MRI and seeing a neurologist. He confirmed what I had felt in my gut for a while–this was MS. The nurse said she had never heard him confirm a case so quickly. I guess I felt oddly thankful for that–my friend, a DO and fellow Christian was praying for quick answers, knowing that many people stay in the gray zone for years awaiting a diagnosis. The MRI revealed two large spinal lesions, and an insignificant trace on the brain.”
What are your current symptoms?
“I continue to have numbness in my back and right side of my body–the type of numbness that is not completely numb, but varying degrees such as pins and needles, a “waking up” feeling, etc. These symptoms were quite weak during my recent pregnancy and have intensified in the past couple of weeks. Along with this, my legs are not being friendly when I get overheated or overly tired. I’m seriously considering purchasing a cane to have around when needed. Right now I’m in the middle of somewhat of a flare-up, but I haven’t had an MRI since last year. I won’t be able to have one with contrast until my baby is weaned.”
You are a mother of seven! How do you manage that many children?
“Having seven children gives me a lot of reason to get up and go for sure. And sometimes causes me to get up and go when I might benefit from a rest. I believe that all of this is part of my journey–our journey, my husband and I. My husband is my closest confidant and supporter. While there certainly are ins and outs of this that we still have to work through, knowing I have a partner who is available and actively involved in all aspects of our home life is essential. I cannot imagine it without Adam, and we have a beautiful loving church community that rallies around us and loves us generously as well.”
Have you taken any medications previously?
“I started Rebif that fall, a daily injection that left me feeling quite pooky for at least a day and sometimes more. Eventually my doctor said this was not the drug for me and that he felt my MS was progressing beyond his scope. My new doctor has a strong focus on research, which is where I have been offered the clinical trial for Ocrevus. Currently I have a deadline of mid-May to completely stop nursing/lactating so we can begin the screening process. I have done the initial screening for eligibility.”
“I still have days where I think I don’t really have anything wrong with me–days of denial for sure, but I am realizing that is not really helpful for anyone. We can’t talk about it as a family if I am in denial, we can’t really move forward until we embrace the reality of where we are. My oldest’s first question was, “Are you going to die?” They want to talk about it and have lots of questions. We are pretty open to discussion in our home, but there are definitely days when I’m just “done” talking about it. My journey with MS is now woven into the fabric of my life, of our lives. Each day God offers grace to move through each new step–sometimes with discomfort and with uncertainty, but always with hope.
I am certainly hopeful for the future. It’s amazing how far they have come already in research and treatment.”
Thank you, Stephanie for sharing your real MS story. I am looking forward to following your family’s journey with the Ocrevus trial.
and please watch and share our MS Awareness video.