“They’re not finding anything wrong through testing,” a family member told me one day. “So, you can rest assured it’s nothing bad.” My face boiled with fury as I wondered how the inability to stand without shaking could possibly be described as nothing bad.
This family member, a physician no less, suggested I find a way to move on with my life — as if thatwasn’t all I’d wanted for the past decade. A debilitating fatigue blanketed me entirely. I could barely walk. Yet, his thoughts were akin to those of the many physicians I’d already seen: There’s nothing wrong. Get over it.
If I’d listened to them — every single doctor that told me to give up — I would be bedridden today.
It all began with stiffness in my legs. Overnight, they became so inflexible I could hear them crack when I attempted to straighten them. The muscles throughout my body were sore as though I’d overexercised, and twitches beneath my skin resembled bugs squirming beneath it. At night, involuntary muscle jerks would wake me up.
During the day, I was fatigued, both physically and mentally. I was dragging a body weighed down by a crushing, invisible burden.
When my symptoms first began, a doctor suggested it might be MS after some unusual findings on MRI images of my brain. He referred me to a neurologist — the head of neurology at an internationally known medical center, actually.
“I don’t know what this is, but it’s not MS,” he told me.
My MRI didn’t paint a classic case of MS, and I didn’t look like someone living with inflammation in my nervous system. My gait was unchanged. My walking speed, unaffected.
At that moment, his words came as a relief. I didn’t want it to be something irreversible or progressive — I wanted to be me again.
I wanted so badly to be the woman I was before waking up one summer morning disabled — I wanted to revert to the carefree 21-year-old I was only weeks earlier. MS meant I’d never be her again (or so I thought), and I wasn’t prepared to accept that.
As months turned into years, my symptoms would vary, changing like the seasons passing me by.
The pain decreased over time, but the weakness continued to grow — stealing my abilities one by one. I was losing stamina for things I once took for granted. Simple luxuries like taking a walk on a spring afternoon or meandering around a museum on a cold winter day.
For a few years before my MS diagnosis, I was experiencing monthly flares that stole my ability to move, even around my own home. I could no longer parent my children independently or participate in outings — I was barely living.
The light at the end of my tunnel grew dimmer with each passing day.
A diagnosis of Hashimoto’s thyroiditis complicated my diagnostic journey. I blamed all my symptoms on my thyroid from that point on. But despite years of thyroid hormone replacement therapy, my symptoms persisted and eventually worsened.
Doctors that took the time to listen suggested various possible culprits. MS was suggested by multiple general practitioners, but the diagnosis was always ruled out by neurologists without a further workup. Other possibilities included fibromyalgia and mitochondrial disease. I was even placed on various mitochondrial supplements, but there was no change in my symptoms.
Every moment of hope led me back to the same darkness.
I never once doubted that I had a serious disease — my symptoms spoke loudly and assertively. But I lived through days — months — years — believing I would continue to worsen while no one listened.
“If I’d listened to them — every single doctor that told me to give up — I would be bedridden today.”
Everyone, family and physicians alike, wanted me to find some way to move on — to accept the way my body was. But I was too physically weak to find a way forward. Words simply couldn’t convey the weakness I was experiencing.
I felt desperate and alone. No one could understand the depth of my struggle but me.
I lost friends along the way. It’s difficult to explain to someone who’s never struggled with their health how a disease can go undiagnosed for so long — even one like MS. Many believed there was something wrong, but they questioned the degree to which I described my disability.
Many believed I should stop searching for an answer. But I’m so glad I didn’t. My mother stood by me through it all — her support provided me with enough strength to persist.
I sought out doctors in every specialty. I traveled by plane to a world-renowned diagnostic center twice. I was treated for Lyme disease, despite testing negative. I learned that some doctors prey on vulnerable patients, offering unwarranted treatments, including expensive holistic supplements that aren’t needed and may even cause harm.
I had my genome mapped — a capability only recently possible. I applied to the Undiagnosed Diseases Network, only to be rejected, as they insisted there was nothing they could do that hadn’t already been done.
My blood was tested ad nauseam — labs were repeated as if something new would suddenly appear. But no one considered sampling my spinal fluid. The one test that held my answer wasn’t ordered for 13 years.
My life revolved around finding a diagnosis. That was the only way I could be the mother I wanted to be — the one my children deserved.
“I felt desperate and alone. No one could understand the depth of my struggle but me.”
I learned to hide the emotional trauma of being undiagnosed because tears led to psychotherapy referrals and an avoidance of medical consideration. I’d relay my story with a false sense of calmness so that it would be received more readily. I let my desperation sink below my surface, shielding it from the healthcare workers before me.
To the best of my ability, I appeared stable, reasonable, and trusting while I waded my way through instability, an unreasonable situation, and lacking any trust in medical providers. It was the only way to proceed as a young, healthy-looking female amid overwhelming levels of gender bias in healthcare.
Through my 13-year diagnostic journey, I heard enough opposing opinions to fill a swimming pool. Your symptoms don’t look like MS. You’re young and healthy — you couldn’t have MS. You don’t walk like someone with MS. MS doesn’t present this way. I trusted their medical opinions, and so I didn’t push for the one test that held the answer — over a decade passed as I lived in a darkness most will never know.
After countless initial visits with physicians, after being told to stop searching for an answer, after enduring years of disability without treatment, a neurologist finally listened. For the first time, someone believed the entirety of my story. He cared, he persisted, and he found the one missing piece of my diagnostic puzzle — a lumbar puncture.
My spinal fluid was tested for signs of inflammation, pathogens, and antibodies to rare autoimmune diseases of the nervous system.
Thirteen years after the onset of my symptoms, a lumbar puncture found two abnormal results consistent with MS: five oligoclonal bands and an elevated white blood cell count. As I heard those words, my diagnostic journey finally came to an end.
For the first time, sitting adjacent to a doctor, I felt safe crying.
I was relieved to have an answer but simultaneously engulfed with fear. At first, I let self-pity blanket me. This wasn’t the answer I wanted. But I found hope amid chaos — this time, in the form of treatment.
“Give the medicine 3 years before evaluating its full potential,” my neurologist said. He believed my condition would improve — that perhaps one day I would be able to accompany my family on short hikes, that I’d once again cook dinner without difficulty, that I’d regain the ability to use an exercise bike.
Two years came and went with minimal change and continued flares. With so many physicians disagreeing over my diagnosis, I had little faith in his words. Thankfully, they proved to be accurate.
I’ve been on treatment for over 4 years now — my symptoms have settled, and my abilities have improved. While I still have daily limitations, I am living, and I am thankful for a second chance. For the first time in my adult life, I am capable of being a mother to my children independently.
“I’ve learned that the hallmark of MS is that there is no hallmark — everyone has their own unique story.”
Routines as simple as preparing their meals and dropping them off at school are responsibilities I’ll always welcome and never take for granted. Trips to museums, vacations to the beach, and short hikes through the wilderness are now part of my life. I see how far I’ve come, and I acknowledge it every day.
I wish I’d known that not every case of MS looks the same on an MRI — and that not every person with MS presents like the next. I wish I’d known that a lumbar puncture was warranted in 2005.
I’ve learned that the hallmark of MS is that there is no hallmark — everyone has their own unique story. Perhaps my story can help someone else in the early stages of the disease.
When doctors aren’t finding the culprit of symptoms, I firmly believe they’re not looking in the right place. With persistence, through tears that help release the trauma, and by trusting your intuition, a diagnosis is possible no matter how many years of a diagnostic journey have been endured.
No one — not even a family member with a medical degree — should say otherwise.
Lindsay Karp is a freelance writer with a background in speech-language pathology. She writes about parenting, life with MS and everything in between. Lindsay aspires to be a traditionally published picture book author and hopes to write a memoir of her 13 year diagnostic journey. You can follow Lindsay on Twitter at https://mobile.twitter.com/KarpLindsay