I’m no longer taking my lack of MS progression for granted

I have several big milestone events coming up, all within a week. My son is graduating from college and my daughter from high school. Additionally, we have my son’s nurse pinning ceremony, a graduation lunch, two graduation parties, Mother’s Day, and lots of family and friends in town for these events. I am busy but blessed.

Another upcoming milestone is my annual MRI scans to assess the progression of my multiple sclerosis (MS). I have lesions in both my brain and spinal cord, so I get the pleasure of spending an extended amount of time inside the machine to obtain imaging of my brain, cervical spine, and thoracic spine, all completed with and without contrast.

The scans are scheduled just a few days before these personal events. This was poor planning on my part, but as many of you know, scheduling an MRI isn’t about convenience, as appointment availability can be very limited.

I tend to think more about my MS and its potential impact on my future as my MRI appointments draw nearer, and again while waiting to hear the results from my healthcare provider. I believe it’s no coincidence that my upcoming scans are scheduled around important personal milestones this year.

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Milestones are times for reflection. I reflect on my children’s accomplishments over the last four years and wonder where the time went. It seems like this phase of their lives went by at lightning speed.

When I reflect on my MS, I realize that I’ve taken my lack of disease progression for granted. I’m struggling to determine if this is a good thing.

The positives

I’m blessed that my MS is currently stable. My last exacerbation was approximately five years ago, and the symptoms I experienced resolved completely with intravenous steroid treatment. I’ve been taking the same disease-modifying therapy since then. Physically, I don’t feel like my symptoms have progressed, and my MRI scans have shown no new or active lesions during this time.

My current symptoms include balance difficulties, decreased sensation and weakness in my lower extremities, spasticity in my feet, mild fatigue, mild tingling in my hands, minor difficulties with manual dexterity, Lhermitte’s sign, and occasional overheating.

Because my symptoms are stable, I think I’ve adapted to their presence in my daily life. This is my “normal.” Additionally, memories of my last relapse are fading with time. I view these things as positive.

Upon reflection, I know these are the reasons I’ve taken my MS stability for granted recently. This wasn’t a conscious process; it just happened. I feel it’s a good thing that my health isn’t my primary concern right now.

The negatives

On the flip side, I believe that taking my lack of MS progression for granted is a bad thing. I had three relapses in five years after being diagnosed in 2014. Whenever a personal milestone event was approaching, I recall being concerned about the possibility of experiencing a relapse on that particular day and missing out on the activity.

I hadn’t even thought about the possibility of missing my children’s upcoming graduation events due to MS until I was writing this column. My nonchalant attitude is a sign that I’ve been underestimating this illness.

MS is so unpredictable. I could experience a relapse at any time, and in the past, I often had no warning that one was approaching. With all three of my initial relapses, I woke up in the morning with symptoms that hadn’t been present when I’d gone to sleep. Plus, they were things I’d never experienced before.

Taking my lack of MS progression for granted in the past five years has probably resulted in me being less prepared to handle my next relapse. I recognize that continued stability isn’t guaranteed.

I also felt some guilt when I realized that my concerns about MS had taken a back seat. I have three acquaintances with the disease whom I encounter regularly, and they seem to struggle with symptoms significantly more than I do. These people don’t have the option to dismiss or ignore their illness like I do.

If my attitude toward my illness were on a pendulum, I’d say I’ve swung too far in one direction. After reflecting on my upcoming MRIs and personal milestones, I need to find a balance between appreciating my current stability while also acknowledging the possibility of future relapses and keeping others’ MS struggles in mind.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.