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

Upcoming milestones and MRIs prompt reflection for this columnist

Leigh Anne Nelson avatar

by Leigh Anne Nelson |

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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.

Comments

Donald W. Dony avatar

Donald W. Dony

Hi Leigh,
I have had PP MS for 10 years. Over the past 5 years, I have received an annual injection of cord stem cells. This treatment was recommended by my neurologist and it has removed over 80% of the symptoms. Something to consider.
Cheers,
Donald

Reply
Urvashi avatar

Urvashi

That is so good to hear. I have secondary progressive MS. I wanted to see if this treatment could work out for me. Could you please share the details of the neurologist and his contact? Thank you so much.

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Letha DeCaires avatar

Letha DeCaires

This really resonated with my own journey. Thank you.

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Terry R avatar

Terry R

This column hits. I have RRMS and have had no new lesions in 12 years. I grapple with symptoms such as you describe. I am 65 and considering stopping my glatiramer injections due to age but worry I am taking the stability for granted. Not sure what to do…

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Suzanne Burchill avatar

Suzanne Burchill

Leigh, what an amazing article. I have never felt so personally connected to the MS experience of someone else as I do yours. You almost perfectly describe my experience. I was dx 12 years ago, have had only one major relapse which resulted in a seizure, a change in meds and diagnosis (changed from RRMS to tumefactive MS), and I experience almost the same symptoms. I'm used to my "normal" and like you, I'm stable and feel like I'm doing much better than others I know with the disease. I often forget that I have MS even though I take meds twice a day. I'm reminded when one of those pesky symptoms pops up, and I think I should try and find a balance as you strive to do. Thank you for making me grateful and mindful. I hope you continue to be stable for many years, and that any relapses are brief. Be well...Suzanne

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Libbie Frank avatar

Libbie Frank

That's good to hear, Donald. I wonder why more neurologists don't recommend this. Are you in the US?

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Bram Platel avatar

Bram Platel

Thank for the nice article Leigh. I can relate. In a few hours I have an appointment for my yearly follow-up.
Like you, I have been feeling well lately and my health hasn’t been on my mind as other years.
I wonder, is that a bad thing? Did the pendulum swing too much in one direction?
Perhaps. It definitely has been swinging too much in the other direction before.
It makes me think about what to do to make it more in balance, without it leading to worry and anxiousness.
Maybe writing a detailed ‘emergency plan’ for as many scenarios that worry me would help me in times that my mind keeps going over ‘what if’ over and over.

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Mia Buchsein avatar

Mia Buchsein

Bram Platel, that is such a wonderful idea! Then you would have "transferred" the information to paper and can (hopefully) tell yourself that you don't have to continue to wrestle with it in your mind. Also, it might come in handy if your support team has access to your plans to help you during any upcoming exacerbation. Not all of us are Blessed to have a solid support system and I believe this would be very helpful when dealing with people not in our regular day to day life. (Such as medical team, therapists, etc) I think I will try this out and pass on the finalized copy to my BFF.

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Laurie Schniebolk avatar

Laurie Schniebolk

Hi, when my son graduated college it was almost 100 degrees and humid. I never use a cane but brought one just in case.Absolutely, best decision. We had to stand outside until the doors opened and because I had the cane, people moved out of the way to let me lean on a pillar. After, when everyone was taking pictures afterwards it was also handy. Enjoy!

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Tom A avatar

Tom A

I have often thought back on my 23 years of Betaseron (MS for 35 of them). Yes, an injection every other day didn’t officially let me forget I had MS. But fundamentally, I was able to ignore the MS and assume things had been halted (normal MRIs, etc.). Only unable to run (quickly across the street, for example, so had to be careful). I look back and am actually grateful for the 15 or so years I thought about it very little. Then I became aware of how treatments and research had changed when my leg began giving me problems a few years back, which was a combination of 3 things, started by MS early on but otherwise other stuff, only knowable in hindsight. Now I am quite MS knowledgeable again. Good or bad? I guess I didn’t have to know about it, but things have worked out OK., even if very differently than expected. I guess it’s an interest disease, if you don’t have it. Flexibility with uncertainty! ( a new mantra?)

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