Case study
I was diagnosed in 2015 via a brain and spine MRI, and this was repeated a year later. In 2016/17, I was treated with Alemtuzumab, following which I have only had MRIs of my brain. In 2017, this showed two new lesions, and it was in June 2018, that NEIDA (no inflammatory disease activity) was confirmed.
Since then, annual brain scans have continued to show NEIDA. Finally, my request for a spine scan was included in April this year but without contrast. The report into the scan references multiple spinal lesions, some of which are ‘new’ compared to the last spine MRI in 2016. The brain continues to show stability and no disease activity.
From reading information available online, I have learned that disease activity can occur in the brain or spine independently of one another and that spinal cord outcome measures have scarcely been used in MS clinical trials, limiting knowledge on the effect of DMTs on spinal pathology.
My questions are:
Can pwMS be confident of the efficacy of their DMT if all trial data is incomplete and potentially flawed due to the lack of inclusion of spinal cord data?
Should someone with MS in my position insist on an annual MRI of the spine and brain?
NOTE: General substack newsletters and microsite are free; only Q&A sessions are restricted to paying subscribers. I can't run and maintain the MS-Selfie microsite, hence the need to pay people to help me do the work. If people want to ask medical questions unrelated to the Newsletters or Podcasts, they either need to become paying subscribers or email (ms-selfie@giovannoni.net) to request a complimentary subscription.
Answers
Q1: Can pwMS be confident of the efficacy of their DMT if all trial data is incomplete and potentially flawed due to the lack of inclusion of spinal cord data?
Q2: Should someone with MS in my position insist on an MRI of the spine and the brain each year?
Listen to this episode with a 7-day free trial
Subscribe to MS-Selfie to listen to this post and get 7 days of free access to the full post archives.
