I didn’t really know what multiple sclerosis was until I had to know.
As a kid, I was aware of the mysterious autoimmune disorder. A friend’s mom had it, but I didn’t really understand and her symptoms were invisible to me. MS is caused by an overactive central nervous system that turns against you, attacking the myelin sheath, the coating around your nerves. This activity causes lesions on the spine and brain. I didn’t know much about this until I started experiencing symptoms myself, just weeks after holing up in my Brooklyn apartment as Covid-19 spread across the country.
Stress from quarantine probably helped throw me into my first multiple sclerosis attack. But I didn’t find out the cause of my weird symptoms until I started pressing doctors for better answers.
Strange sensations
First, my left cheek near my nose and upper lip went numb. After a week, the numbness spread to the rest of the left side of my face. I had experienced neuropathy in the past, but doctors mostly dismissed me when I reported it. This time, I assumed the sensation would go away. Eventually, it did.
The following month, April 2020, the thumb on my left hand went numb, which later spread to the rest of my fingers on my left hand. When I tilted my head down, a shock-like feeling traveled down my spine. I was alarmed and set up a video visit with my primary care doctor. She thought it could be a pinched nerve and assigned me in-person physical therapy.
For weeks, I worked with a physical therapist, to no avail. Both of my feet went numb. One night, as I was trying to sleep, my shins felt like they had been set on fire. I had a panic attack, and weeks of insomnia followed. Yet my doctor told me to continue physical therapy and gave me a prescription for sleeping pills.
I began Googling my symptoms more and more. The shock-like feeling going down my spine matched the symptoms of Lhermitte’s sign, an indicator of MS caused by lesions on the cervical spinal cord. Tired of no answers from my PCP, I sought out a specialist on Zocdoc.
Dr. James Lin, a spine surgeon from Mount Sinai Hospital in Manhattan, spoke with me over video. After he told me none of my symptoms sounded like a pinched nerve, he sent me to get an MRI. Several days later, images of my spine had come back — the diagnosis looked like MS. I was immediately referred to Dr. Sylvia Klineova, an MS specialist who is my neurologist to this day.
I drove from Greenpoint to Dr. Klineova’s office in Manhattan. I could tell she was pretty convinced this was it, but she wanted clearer MRIs. She ordered images of my brain, cervical spine and thoracic spine. I had lesions in all three areas, but mostly on my spine.
I took some blood tests to rule out other causes and performed a bunch of physical tests. But the MRIs were clear enough, and my doctor delivered the diagnosis of relapsing remitting multiple sclerosis to me in-person in August 2020. I was in absolute denial for some time and cried constantly.
Diagnosis delays
Little did I know I was one the luckier ones. After my initial symptoms in March 2020, it took around five months to get a definitive diagnosis. This is quick compared to many cases, says Dr. Aaron Boster, who runs the Boster Center for Multiple Sclerosis in Columbus, Ohio.
About 1 million people around the world deal with MS, which actually makes it a rare diagnosis. The disease was identified in 1868, but advanced treatment has only become available in the past 20 years.
A number of factors can delay diagnosing MS. Socioeconomic barriers, for instance, can prevent patients from affording diagnostic tests and MRIs. But mainly, Boster says, there isn’t a lot of understanding in how the disease presents across the medical field. MS is sometimes confused for conditions like fibromyalgia, vitamin B12 deficiency, hypothyroidism and Lou Gehrig’s disease, which are usually ruled out by blood tests.
“Someone can have variable symptoms that don’t fit into a clear box,” Boster says.
The pandemic and the healthcare triage of Covid’s worst peaks only delayed MS diagnoses further, since doctors couldn’t always offer elective procedures or MRIs. Under normal circumstances, getting diagnosed with MS can be a hard road. Being diagnosed amid the Covid-19 pandemic adds incredible complications from the outset.
Emotional earthquakes
There is no cure for MS, which makes a diagnosis incredibly scary. If left untreated for too long, the disease can lead to mobility and vision issues, memory problems, sexual dysfunction and difficulty controlling the bladder.
MS also affects mood, and most patients experience depression. There were times I felt suicidal during the diagnosis process.
Once I was diagnosed, my doctor immediately recommended Tysabri, a monthly infusion treatment that’s one of several disease-modifying therapies. It freezes activity in the nervous system that creates lesions. Without it, my doctor said I could face mobility problems because of the buildup of lesions on my spine. No matter my fear of pharmaceuticals, I decided I needed to get on this drug.
Thankfully, some of the symptoms that flared up during the pandemic have subsided. My treatment appears to be working: After my first year on Tysabri (natalizumab), I haven’t developed any new lesions. Annual MRIs will be the main indicator of how my MS unfolds.
Research says lifestyle changes can help multiple sclerosis patients with their symptoms. Along with my medication, I’ve started practicing yoga daily and try my best to stick to a diet of foods that don’t cause inflammation.
I get by with support from my loved ones and the MS friends I’ve made who get what it’s like. While there’s still no cure, knowing about more research on new treatments, including a drug that can repair damaged nerve coatings and applying the Covid mRNA vaccine technology to MS and other autoimmune disorders, helps my peace of mind too.