Today was a WOW kind of day! Instead of sitting here, quietly ruminating about it all in my head, I thought it a healthier, better idea to share as a post. Let me begin with a brief background about me and my MS.
I am 50 years old and was diagnosed with MS in 2001. After fifteen years of living with this disease, I continue to learn new things, but have always considered myself to be well read about MS…about my own MS. Regarded as a compliant patient, I’ve kept on track in keeping with regular checkups and other appointments with neurologists or other needed specialists. I’ve had numerous MRI scans, have read the radiology reports, and have often viewed some of my scans, but with little education as to what I was looking at. For years, I had known there were old lesions scattered throughout my spine, but because no one spoke about any details and my mobility had remained somewhat tolerable and intact, my focus remained on improving – or at least maintaining the cognitive health of my brain. In fact, several years ago, I was told one of my brain lesions had become a large black hole (dead tissue beyond repair). My neuro at the time strongly urged me to reconsider trying one of the MS drugs to combat the possibility of early onset dementia. This was terrifying news, so I complied with her advice, started taking a new medication, and began to exercise my brain via music and other new/creative activities…and writing. http://www.whatisneuroplasticity.com. Several years and other life changes have come and gone and I definitely feel training, or retraining my brain in this creative manner has worked wonders for me in many ways. My mental health (e.g., anxiety and depression) continues to reap therapeutic benefits and I’ve discovered a new purpose, new passion in life.
For the last several years, I have been on and off 5 different MS “dmd” medications due to a number of side effects, yet over the last three years my brain MRI scans have shown no new lesions. I decided this was a fantastic reason to discuss the plan to avoid taking any more MS drugs. Long story short, what I thought I knew about the current status of my MS barely touched on the reality of what is, was, and has been going on inside my body. Annually, every spring, I have a brain scan (includes the brain stem), but every few years, additional scans of my spine are needed for evaluation and/or progression status. What began as a normal, early morning appointment with my neurologist, my routine check-up turned into one of the most eye opening experiences I’ve ever had. As usual, we engaged in our typical Q&A banter, yet I was soon taken aback and caught off guard by a bittersweet act of care and compassion on her part. In silent response to a simple question I had asked (as of now, I can’t even recall what my question was) she gently leaned over and pulled my chair next to hers so that I too could see her computer screen filled with years of my MRI scans – my brain, cervical-spine (c-spine), thoracic, etc. My brain scans looked similar, year after year, scan after scan, with and without contrast. But my jaw dropped when she pulled up my spinal images. Today, I was told that my c-spine is most bothersome. It is the area most filled with lesions and of most concern. I truly have no idea if I had ever been informed of any of these findings in the past, but TODAY…it was vividly clear and I was able to see it all for myself. This “new” information was explained to me with such knowledge and compassion by a beautiful, kind doctor. She treated me like a human being and called me Mary. The experience spurred on a flurry of a time filled with more questions, interaction, and “aha” moments which provided a bit more clarity regarding a variety of symptoms.
As I write this, I’ve come to realize not everyone with MS is familiar with the anatomy of the human spine – even if there are lesions or injury which play a part. Here’s the basic anatomy starting with the brain. I’ve included an image to refer to as well. By the way, it’s supposedly quite rare to find lesions in the sacral or coccyx areas.
• Brain/Brain stem
• C-Spine (neck)
• Thoracic (upper/middle spine)
• Lumbar (lower back)
Here are some important thoughts and questions to ask yourself:
How much do you really know about YOUR BODY and YOUR MS? Does your neurologist sit down with you and actually SHOW you your scans vs. the radiology report? Do you ASK your neurologist to schedule a consult with you about your tests? Does he/she point out and explain what your MRI scans reveal (past and present)? These one-on-one sessions can help you and your doctors bond and create a level of better UNDERSTANDING – especially when it might be time to make important decisions about drug therapies and other life changing decisions?
Yes, the events of today were somewhat jarring, but not once did I feel a sense of panic or fear. Instead, I was able to gain clarity, look towards the future, and am grateful. I will remain open minded and candidly inquisitive about research, drugs, diagnostics, etc. I highly recommend others try their best to also study and stay abreast of THEIR own disease as best as possible. It’s a challenge – science and research is ever changing. As patients, we regularly read/hear the phrase, “be your own best advocate.” Maybe the syllabus for “patient advocacy 101” should encourage the inclusion of our doctors and an enthusiasm to build better relationships. Ask for help – request an occasional, brief consultation, or tutorial. It’s your right and a good neurologist will be happy to do so. If not, find a physician who will.