My MS started when I was 40. I had an established career, a comfortable income, savings, and excellent benefits. I was able to quickly and effectively get medical treatment, a diagnosis, and fight MS. If this had happened in my early 20's, when I was broke and uninsured, I would have been screwed. If it had happened in my 30's, when I was self-employed, I don't know how I would have survived. If it had happened even a few years ago, when I was living paycheck to paycheck, digging out of a post-divorce financial hole, and paying for full-time child care, it would have devastated me financially. In my 40's, I was able to fight MS.
The first time I learned I might have MS was when I went to urgent care for my second steroid infusion after losing vision in my right eye and being diagnosed with optic neuritis. The on-call doctor, appearing on a video screen, asked, "You're hear for an MS relapse?" Umm..., "I haven't been diagnosed with MS," I said. I then spent months getting MRI's, a spinal tap, lots of blood work, a chest X-ray, and meeting, over and over again, with a neurologist and MS specialist.
Sept 25, 2020: woke up unable to see out of right eye, eye doctor, urgent care, optic neuritis diagnosis, blood work, start five days of steroid infusions Sept 29, 2020: brain MRI w/ contrast Sept 30, 2020: video visit w/ neurologist, some lesions on brain MRI, possible MS, referred for more tests Oct 2, 2020:… Continue reading My MS Timeline
I had spent two months wondering if I had MS. I lost vision in my right eye, had three MRIs, a lumbar puncture, countless blood draws, and several appointments with neurologists. At first, they suspected MS, but needed more tests to rule out other conditions and confirm MS. Then, the high white blood cell count… Continue reading A Path Forward
From the moment I realized I couldn't see out of my right eye, I wanted to know what was wrong, and what I needed to do to fix it. I started off thinking, brain tumor, so when I learned it was likely MS, that felt like a relief. I started researching MS, the tests, the… Continue reading A Puzzle
I did a lumbar puncture to determine whether my vision loss was due to MS. From my own research, I knew that one thing that can indicate MS is protein in the spinal fluid. I was hoping the results would confirm MS. I wanted a diagnosis; I wanted an answer. Then, I could start treatment;… Continue reading Unexpected Results
After the lumbar puncture, I had an awful headache and my back hurt so much that it was hard to walk. The intense, piercing headache subsided pretty quickly. But, the intense back pain that made me walk hunched over, in slow, deliberate steps lasted into the next day. It was hard to sleep that night.… Continue reading The “Headache”
When I first read that a lumbar puncture was a common diagnostic test for MS, I immediately thought, "spinal tap." Horror movie. Heavy metal. Hammering a nail into your spine, excruciating pain, dangerous. But, then a remembered that I'd had a spinal block when my son was born and it wasn't that big of a… Continue reading Lumbar Puncture
I was anxious and excited to finally talk to a neurologist. It had been five days since I lost vision in my right eye. Five days of doctor's appointments, steroid infusions, blood draws, and an MRI. Five days of Googling symptoms, wondering, and worrying about what was wrong with me. Five days with no answers.… Continue reading First Neurologist Appointment
Whenever I saw someone get an MRI in a movie, I thought, I could not do that. The idea of being trapped in that tube, unable to sit up or move, was terrifying. But, I had to get an MRI. Of my brain. It was 6 o'clock at night. The offices were closed, except urgent… Continue reading The First MRI
On Sunday, I went back to urgent care for my third steroid infusion. This time, they called me into a small pre-screening room first. There was a nurse who took my vitals and asked a series of routine questions. There was also a doctor. Her face was on an i-Pad-like screen, which was attached to… Continue reading They Think It’s MS?
When I left the eye doctor, I was in tears. I couldn't see out of my right eye. I knew it was neurological, but I didn't know what was wrong with me. The eye doctor told me to go to urgent care for a neurological exam, steroids, and an MRI. I was panicking, imagining the… Continue reading Steroids
On Thursday I worked from home while my son had virtual school. We went to a protest for police accountability and racial justice; we held signs, we chanted, and we listened to powerful speakers. On the way home, we sang along with the radio and danced in the car, not caring how silly we looked.… Continue reading Day One: I Can’t See
I celebrated my 40th birthday with a girls weekend of wine tasting, a night out at a Cirque du Soleil-style dinner theatre, and brunch. I'd been looking forward to 40 and wanted to make a big-ish deal out of it. I spent weeks shopping for just the right dress, shoes, and accessories to feel fabulous,… Continue reading My 40th Year