I saw my primary care physician on January 14th, 2021, just two months after my first symptoms. Working at a healthcare facility helped me get a foot in the door and I was able to move things along much faster than most patients. The average turnaround time from when a patient has their initial medical consultation to diagnosis is around six months. The overall time from symptom onset is closer to two years. I needed to know now.

My PCP agreed that whatever was going on was likely neurological and scheduled an EMG to rule out myasthenia gravis. Given the unilateral weakness and drooping eye, I fit the profile. I was rooting for an MG diagnosis. It’s a horrible condition, but the other likely culprit sounded worse to me. My buckling knee and general weakness were concerning for multiple sclerosis. Dr. Thompson brought it up before I did and at the mention of it I felt myself tear up. It would be my worst nightmare. My favorite past time is accumulating endurance miles. I love hiking, cycling, running, and walking for miles around town. I couldn’t fathom the repercussions of having a disease that robs people of their legs. She assured me I shouldn’t be worried. I wasn’t presenting the classic symptoms for a female my age. Any tests would be to rule it out so we could move on and find the true culprit for my symptoms.

I had my EMG on January 28th and myasthenia gravis was ruled out. I didn’t even have carpal tunnel syndrome.

On February 5th, I had an MRI of my brain, cervical spine, and thoracic spine. I work in the Radiology Department, so I was sitting beside the radiologist, a friend, as he scrolled through the hundreds of images. We both sat quietly as the scan showed a large lesion on the left side of my brain stem. My thoughts went into overdrive. Maybe it isn’t MS. Maybe it’s a tumor! I was, honest to goodness, wishing for a tumor because at least there was a chance they could cut it out and I could get my life back. I was so scared of MS that I was hoping for brain cancer! Unbeknownst to me and my untrained eye, there were also several lesions scattered throughout the rest of my brain. I cried as he hugged me and explained what I was looking at. The official report stated possible demyelinating condition versus infarction. Infarction would mean I had experienced a stroke. Given the inconsistencies and fluctuations in my symptoms, I felt confident it wasn’t a stroke. My appointment with the neurologist was moved up to February 15th. He declined to make any comment on possible conditions. There are a lot of diseases that affect the central nervous system and he needed more information to make a diagnosis. The next morning I was lying on my side with a huge needle in my spine.

The lesion on the left side of my brain stem and culprit for most of my arm and leg issues.

The spinal tap was uncomfortable, but not bad. It was done in my doctor’s office on an outpatient basis and I was home resting later in the day. The following week was horrifying. For nearly 8 days, I was unable to sit without excruciating neck pain and nausea. I could walk, stand, and lie down. But, as soon as I sat, I was in agony. I would stand hunched over my keyboard at work. I would eat standing. If I was home, I would be lying down or standing, no sitting. Driving across town would bring me to tears. This was one of my first experiences with how my body would now react to things foreign to it.

My spinal fluid was sent away to Mayo Clinic, which meant a long and agonizing wait. One by one results would trickle in. I would get notifications throughout the day that my chart had been updated with new results. I was tied to my phone for nearly a week waiting for answers. It was, needless to say, agonizing. No indicators for Lyme disease, negative for Sjogren syndrome, nothing to point to lupus, negative for inflammatory myopathies. I would get results for things I’d never heard of and spend the next hour Googling lab values.

The last result to come in was the multiple sclerosis panel. Oligoclonal bands are immunoglobins and their presence in spinal fluid indicates inflammation in the central nervous system. I had nine oligoclonal bands in my spinal fluid. From my understanding, that is a lot. I’ve read that ten is the magic indicator that you will progress to the latter stages of the disease. The presence of the nine oligoclonal bands and the lesions on the MRI were enough for him to call it.

What seemed like hundreds of results trickled in one at a time. For nearly a week I was tied to my phone or computer checking for updates and Googling what each value meant.

My neurologist gave me the official diagnosis of multiple sclerosis on February 26th, 2021. I got my answer in just over one month from my initial consultation and less than four months after my first symptom.