This post is Part Two of My MS Story
Have you read about the day my legs went numb and tingly?
Friday, June 3, 2016, was the first time a doctor said the words I’d feared for years: Multiple Sclerosis.
My road to diagnosis felt unreasonably long. You’d think when a young woman shows up at urgent care with sudden, unexplainable numbness and tingling from the waist down that the medical staff would demonstrate an urgency to figure out what was wrong. I expected the sense of urgency a mother has to check on her bawling toddler after a face plant.
“It’s likely Guillain-Barré syndrome or Multiple Sclerosis,” the doctor told me apathetically after a three-minute exam. “You need an MRI, but we don’t have a machine here. Schedule an appointment with your primary doctor, and go to the emergency room if you start losing mobility.”
Super helpful, Dr. Urgent Care. I already preemptively set up an appointment with my primary doctor before going to urgent care. Now I waited.
Monday, June 6, 2016, was the second time a doctor said the words Multiple Sclerosis to me.
My primary care doctor agreed that my symptoms aligned with Guillain-Barré syndrome (GBS) or Multiple Sclerosis (MS). I had (what I thought was) severe seasonal allergies a few weeks before the numbness. The cause of GBS is unknown. However, a majority of people who get it experience an infection about six weeks beforehand. GBS was a viable explanation. She also added a possible B12 deficiency or a pinched nerve into the mix.
My doctor’s diagnosis plan started with an MRI of my brain and lumbar spine to check for lesions or a pinched nerve. She also ordered blood work.
My blood work was normal—no sign of an infection. B12 levels were normal. So far, on paper, I looked like a healthy young adult.
Unfortunately, my insurance company denied my doctor’s order for an MRI. They stated I first need six weeks of physical therapy and must show no improvement before they’d approve the MRI. Apparently, the insurance claims employee knows more than my doctor, who had seen me for nearly 15 years. It’s best to aimlessly treat someone without knowing the root cause of their symptoms, right?
Seriously, F the person who reviewed my case and denied it. Do you have any idea how much you negatively impacted my mental health? I had to wait unnecessarily long to have answers to my questions. Your negligence may have caused legions in my CNS that forever decreased my quality of life. Time = Brain when someone has MS. To require someone to get physical therapy when they need a disease-modifying drug (DMD) is cruel and inhumane. End rant.
I refused to go to physical therapy. In my opinion, physical therapists shouldn’t treat someone exhibiting numbness and tingling in their legs without knowing what’s causing it, or at least knowing the spine is healthy. What if I had a severe spine injury and the therapy harmed me?
Instead, I requested a neurologist referral from my primary doctor, hoping my insurance would approve an MRI order from a neurologist.
Unsolicited Pro Tip: Remember that you’re in control of your medical care. We have to advocate for ourselves. We have to escalate our concerns. We have to question our medical team and insurance company.
All neurologists near me were booked out for three months. The soonest I could get in was September! Again, I’m numb and tingly from the waist down and can’t get answers from the US health system for MONTHS.
The medical scheduler clearly heard the disappointment and desperation in my voice. She told me that the neurology office had a Nurse Practitioner available in July who could see me instead. Yes, please!
Tuesday, July 12, 2016 was the third time a doctor said the words Multiple Sclerosis to me.
Over a month since my legs went numb and tingly, I finally spoke to a specialist. After explaining my symptoms, my nurse practitioner (NP) conducted various neurological tests, watched me walk, and tested my balance.
She agreed that MS and GBS were likely causes of my symptoms, noting that GBS is less likely because my symptoms weren’t progressing. Other possible reasons indicated in my appointment notes were Transverse Myelitis and Neuromyelitis Optica.
Which meant I needed an MRI.
She ordered an MRI with and without the contrast of my brain, C-spine, and T-Spine. She thought the previous MRI request of my L-spine was why my insurance denied it the first time. It’s not a common to have MS lesions in the L-spine.
Lo and behold, a few days later, my insurance company approved my MRI.
I was calmer than anticipated the day of my MRI. My husband and I spent weeks researching MS. Knowledge equals power. We wanted to know as much as possible to prepare for that potential diagnosis. After nearly eight weeks, I just wanted answers. I needed answers. Knowing the cause of my symptoms allowed me to properly manage my health.
Not knowing what is wrong with you is torturous. I read stories about people who struggle for years to get diagnosed. I cannot imagine prolonging my diagnosis any longer. The anxiety consumes you. You don’t want to make plans because of the ‘what ifs.’ The complete loss of control and autonomy of your body and health eats away at your well-being.
We arrived at the hospital around 9AM for my MRI, my husband by my side for moral support. I had an MRI before when I was in high school because of my chronic migraines. I knew what to expect. But having three areas of your body scanned with and without contrast is a long process. The machine space-shipped around me for nearly two hours while I listened to Imagine Dragons.
The MRI technician seemed sad when the scan was over. I knew better than to ask. They aren’t allowed to tell you anything about your results or if they noticed anything abnormal. But there was empathy in her eyes like she wanted to hug me and tell me she’s sorry.
Or maybe she was tired.
Thursday, July 21, 2016 was the first time a doctor said the words You have Multiple Sclerosis to me.
We weren’t anticipating results for a couple days. My heart dropped into my stomach when I saw my neurologist’s office calling a couple hours later.
My nurse practitioner greeted me when I answered the phone. My results were already sent to her. The scan revealed I had:
- Lesions in my brain. One lesion was “enhancing,” which meant my immune system was actively attacking that area.
- Lesions in my C-spine. Two lesions were enhancing.
- Many lesions in my T-spine. One lesion was enhancing at vertebrae T7, which was likely the culprit for my leg numbness and tingling.
The exact words she used to break the news to me aren’t in my memory. She mixed compassion and empathy into the terrible news as she informed me that I definitively have Multiple Sclerosis.
We finally had an answer.
I knew I had MS for a long time before my NP formally told me. In the weeks leading up to my diagnosis, I educated myself and emotionally preparing for the news. On the day of my MRI, I woke up confident that I would be strong enough, thinking that I wouldn’t even cry.
But the truth that I’ve come to know is that nothing prepares you for being diagnosed with MS.
I fell to the floor next to our dogs and sobbed.
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