When I had a baby, it was exciting, amazing, and exhausting. As any new parent knows, the lack of sleep and the stress of caring for a newborn can wreak havoc on your body. As the brain fog and headaches started to set in, I blamed the nighttime feedings. Then, as my baby started sleeping through the night, I thought my body just needed time to adjust. Being a new mom is hard, after all.
On a sunny afternoon in June 2024, I picked up my baby and felt a shock go down my neck. I thought I had pulled a muscle picking up my 99th percentile 9 1/2-month-old. When the numbness in my left hand set in a few days later, I assumed I had pinched a nerve. But a little voice in the back of my head reminded me of the optic neuritis I’d had five years earlier. Had multiple sclerosis finally come for me after all this time?
### The First Signs
In the spring of 2019, I had what I thought was a panic attack in the middle of work — a piano lesson I was teaching on the Upper East Side of Manhattan. Flashing lights and colors exploded across my view. I quickly excused myself to the bathroom. I felt pressure behind my left eye. I took deep breaths, regained my composure, and finished the lesson. Something was different though: a cloud had taken over my left eye.
I made an appointment with an optometrist, who told me my contacts needed to be replaced. I was relieved. But as the blurriness continued even with new contacts and glasses, I knew something was wrong.
I spoke with a specialist, a neuro-ophthalmologist, who explained that my vision problems might be an early sign of multiple sclerosis. I was in complete shock. Back then, I didn’t even know what MS was. All I knew was that it was an incurable disease that I most certainly couldn’t have. I was in good health.
When I got home from that appointment, I started researching what multiple sclerosis does to the body. I became frightened. MS is a lifelong condition — an autoimmune disease that can damage the brain and spinal cord. Optic neuritis is an early sign, according to the Cleveland Clinic.
I was sent for an MRI the next morning. My brain scan came back clean. There was damage to my optic nerve, but no lesions were found anywhere else. It was amazing news. I would spend the next five years having regular appointments and yearly scans with a possible MS diagnosis looming over me. But as each MRI report showed no changes, I was able to put that possibility in the back of my mind.
### A New Chapter: Motherhood and MS Flare-Up
Then, in August 2023, I gave birth to my amazing baby boy. My postpartum recovery was fairly easy, and I felt like I was getting back to my pre-pregnancy self within a few months. But then the headaches started: sharp, ice-pick flashes of pain that would come on suddenly. Afternoon fatigue set in most days. The numbness that started in my left hand quickly spread to more of the left side of my body. I was hoping desperately that I had just pinched a nerve.
As I sat outside in the sun on Father’s Day, the day before my next scheduled MRI, I had a bad feeling about what was going on with my body. It was a hot day. MS and heat don’t mix well. I had read about Uhthoff’s phenomenon, when MS symptoms worsen in the heat. As I watched my baby play, the sun burning down, the numbness became more intense.
### MRI and Diagnosis
A few days later, my MRI results were back. My brain was fine; that was good news. But my heart dropped when I saw the next report: “Enhancing spinal cord lesion — active demyelination.” I knew exactly what those medical terms meant. Something was very wrong: a dangerous lesion had appeared on my spine.
I was able to schedule appointments with my doctors quickly. I saw from the look on my neurologist’s face that this was serious. A spinal lesion was more than he’d expected. He explained that lesions on the spinal cord usually have distinct symptoms, while lesions on the brain can sometimes be asymptomatic. The spine simply isn’t as good as the brain at repairing itself, and these lesions can lead to a host of physical problems.
My doctors agreed I should be put on a high dose of steroids, which is the typical treatment for an MS relapse. I sat in my kitchen the next day preparing to swallow 25 little white pills totaling 1,250 mg of prednisone. This would be my regimen for the next five days.
If you are familiar with prednisone, you probably realize that 1,250 mg is a wildly high dose. The doctors felt it was important for me to take the medication to calm my symptoms until I could get on a disease-modifying therapy (DMT) to help prevent future relapses.
### The Steroid Experience
I don’t want to say the treatment is worse than the disease, but it might be close. As I took the prednisone each day, I felt like my body was deteriorating. I couldn’t decipher if it was the steroids or the MS making me so sick, but I became weak and anxious. I was having spasms in my back along with muscle pain throughout my neck, back, and legs. I was lightheaded and dizzy. My vision was blurry. I felt like I was dying.
Meanwhile, my son needed my attention more than ever because he was teething and getting ready to take his first steps. I called my doctors, who told me to stay the course. I ended up in the emergency room with a panic attack and low electrolytes on day four.
After five days of pumping my body full of steroids, I experienced two weeks of withdrawal when I stopped: insomnia, depression, mood swings, muscle cramps, and paranoia.
### Confirming the Diagnosis
Just as I felt my body start to recover from the relapse and the steroids, it was time for a spinal tap to rule out possibilities beyond MS. Having a large needle inserted into my spine for 20 minutes in order to collect enough cerebrospinal fluid was terrifying. Recovery was difficult and took time. I couldn’t lift anything for days, including my son.
Fortunately, my mom stayed with us for a few weeks to help care for the baby, who was about to have his first birthday. I rested and recovered, hoping that I could finally start to regain some sense of myself.
The results of the spinal tap came back with 13 oligoclonal bands. While I could barely pronounce this, I understood that these bands are a sign of inflammation in the nervous system. Their presence confirmed what I had suspected. I had MS. The doctors confirmed RRMS — relapsing-remitting multiple sclerosis.
### Living with MS
I have, of course, wondered how I got MS. There is no straightforward answer. Experts don’t know what causes the disease, though having a baby may have contributed to the flare-up that led to my diagnosis. While MS often becomes inactive during pregnancy, it can come back with a vengeance during the postpartum period; studies have shown an increased risk of relapse during this time.
The first year after my diagnosis was filled with physical adjustments. I have had to learn how to control my stress because my body has a strong response to any anxiety: increasing numbness, back pain, balance issues, headaches, fatigue, mood swings, and vision problems. I must pace myself in order to stay feeling well. Activities like math and scheduling need to be done in short spurts.
The heat intolerance I described earlier is something I have to deal with all the time. I’ve also had shingles several times, a side effect from the medication I take daily.
I’ve connected with other members of this MS club that no one wants to be a part of, and many of them have told me that the first year after diagnosis is the hardest. It was certainly a trying year for me. The fear and anxiety took over more times than I can count.
My middle-of-the-night thoughts frequently turned to what-ifs: How could I care for my son, run a business and keep living in a walking city like New York with this disease? Would my child one day be diagnosed? Will I be a burden to my husband and family?
### Finding Strength and Hope
It took time, but I have done my best to take control of my diagnosis rather than let it control me. I made a promise to prioritize my physical health so that I can be here for my family. While I was usually the last one picked in gym class, I’m now an avid jogger, pushing my son all over the city in his stroller. I added some yoga and strength training to my routine. I adjusted my eating habits, emphasizing foods that don’t cause inflammation.
I’ve also started therapy and reduced my work hours to have more time with my family. I would never have chosen this journey, but it has led to some positive changes in my life. I take my medication and try not to let the negative possibilities consume me. Many people live perfectly normal lives with MS, and I plan to be one of them.
My diagnosis has given me more empathy toward others as well. No one on the street would guess that I have MS. I try to give grace to others around me who may be experiencing their own invisible illness. My husband and I try to take note of the good things in our lives each morning on our daily walks. I’ll always be grateful that I met knowledgeable doctors who offered me hope through the incredibly dark time of my diagnosis.
Although funding for MS research has recently been cut, I hope to advocate for future funding to find better treatments. For now, there is no cure for MS. Even with the great treatments that are available, progression of the disease may still continue and can’t be totally stopped, even without relapses.
But I remain hopeful. For today, I am grateful that I have been relapse-free for over a year. I will continue fighting to remain healthy for my son, my family, and myself.
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**Michelle Maves** is a writer, teacher, musician, and the owner of Take Note Lessons, a music lesson and tutoring company in New York City. Connect with Michelle at her website.
*All views expressed in this article are the author’s own.*
https://www.newsweek.com/ms-diagnosis-after-birth-10882923