Unexpected Results

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; I could make a plan, research, and prepare. For me, not knowing what was wrong was scarier than having MS.

On the way home from the lumbar puncture, I got a notification that lab results were in. I looked and saw protein in my spinal fluid. It’s MS, I thought. Relief. Now I could discuss MS with the neurologist, treatment options, and what to expect. I could buy books, research, and listen to podcasts. What I didn’t realize at the time was that this was just one of many tests of my spinal fluid. Which I should have realized because they took four vials of spinal fluid. Over the next few weeks, I would continue to get notifications of results from various tests. Ding, new lab results. Ding, new lab results. Ding, new lab results.

One day my neurologist called me. Unplanned. No appointment. That is terrifying! Doctors don’t just call you out of the blue with good news. He told me that the there was a high white blood cell count in my spinal fluid and that was unexpected. He told me he was consulting with an infectious disease expert. Infectious disease expert?!? He asked if I had a headache or a stiff neck. Um, headache? Yes. I’d had a headache since the lumbar puncture. It had morphed from brain wringing that made me dizzy and nauseous to stabbing and tingling, but it was pretty constant. I described the headaches and he thought they were from the lumbar puncture and was not worried. He said he didn’t think we needed to start antibiotics, but if I had a fever or headache, to let him know right away.

So, of course, I checked my WBC count online and Googled what it meant. Not a good idea. Google told me that the level of white blood cells in my spinal fluid indicated meningitis. And, when you Google meningitis it tells you really scary things like it’s fatal, and quickly, and requires immediate treatment. So, that was terrifying. I noticed and second-guessed every ache and pain and had several sleepless nights.

Ding, more lab results. One of the lab results showed that I had six Oligoclonal bands in my spinal fluid. I looked this up and learned this is one of the main indicators of MS. In fact, this is the protein they were looking for, not the one from the first lab result I saw. But, the neurologist was so puzzled by the other results that he was not sure it was MS. He sent me for additional testing and to see an MS specialist for a second opinion. I went back to the lab and had more blood drawn. And waited for more results.

I met with the MS specialist over video. I had looked her up and read about her MS residency online. She was an attractive woman, I’d guess around forty, she was warm and confident at he same time, she spoke with an accent and wore a smile. I felt comfortable talking to her and I trusted her. She went over my brain MRI, showing me a copy and pointing out the small lesions. She said that some of the tests indicated MS, but other things were not consistent with MS. She thought it was more likely another disease that presented like MS and wanted to wait for the results of many other tests, including the MRI of my spine. She said she also wanted an MRI of my eyes, to rule out a tumor and confirm whether I actually have optic neuritis. Tumor? She didn’t think that was likely, and there was no tumor on brain MRI, but even hearing the word shot panic through my body.

I had no diagnosis. Maybe not MS? Maybe something else? Meningitis? A tumor? Another auto-immune disease?

Over the next weeks, my phone dinged daily, sometimes several times a day, with new lab results. Lyme disease: negative. Lupus: negative. Syphilis: negative. AIDS: negative. High level of this, low level of that. Every time, I looked at the results, I Googled what it meant, I researched and played doctor and tried to diagnosis myself.

And then, I had a panic attack.

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