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I am 55 years old and was diagnosed with MS in 2001. After 21 years, I have always considered myself to be well read about MS – 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 neurologist 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 through music and other new and creative activities – and writing. 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.

For the last several years, I have been on and off seven different MS medications because of a number of side-effects. I am about to start Kesimpta – fingers crossed. 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 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 question and answer 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 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. I was told 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 now 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 that 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.
 

Human Spine Brain/brain stem Cervical spine (neck) Thoracic (upper/middle spine) Lumbar (lower back) Sacral Coccyx

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 versus the radiology report? 
• Do you ask your neurologist to schedule a consult with you about your tests? 
• Does he or she point out and explain what your MRI scans reveal (past and present)? 

These one-on-one sessions can help you and your doctor 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 can be somewhat jarring, but not once did I feel a sense of panic or fear. Instead, I was able to gain clarity and look towards the future, and I am grateful. I will remain open-minded and candidly inquisitive about research, drugs, and diagnostics. 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 – the science and research is ever-changing. As patients, we regularly read or 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 a tutorial. It’s your right and a good neurologist will be happy to do so. If not, find a physician who will. By the way there are other things to consider:

How often to have an MRI: It’s typical to have an annual MRI and I highly recommend you do so.

Brain atrophy report/scan: This is a fairly new report that shows the atrophy of the brain in correlation to MS and age.

Gadolinium contrast or not:  when it’s useful versus not needed: In my opinion, It’s important to have the contrast in the early days of diagnosis. This dye lights up lesions and activity. Yet after time (could be years) it may not be necessary to include contrast. This conversation needs to be between you and your neurologist. By the way, you have every right to refuse contrast/dye, yet study and think it over. 

Open versus closed MRI machines: Claustrophobia can be a big issue. Talk to your doctor about how to soothe you and your MRI experience. I’ve had so many, it doesn’t bother me anymore. Maybe a Benadryl is all I’ll need. However, you’ll get a much better, clearer scans if you have a closed MRI.