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 treatments, the prognosis. I wrapped my head around a possible MS diagnosis. I wanted a diagnosis. But, appointment after appointment, there were no answers.
I felt like I was lost in the woods, or adrift at sea, stuck, not knowing which way to go. You can’t start medication when you don’t know what’s wrong. You can’t research when you don’t know what’s wrong. You can’t stop your mind from racing and taking you down dark, winding rabbit holes, when you don’t know what’s wrong.
Eventually, I was referred to a neurologist who specialized in MS. At our appointments, she kept telling me that my case was a “puzzle.” I felt like I was in an episodes of Grey’s Anatomy or House where the doctors are trying to diagnosis some obscure disease. My brain MRI had lesions consistent with MS, but not conclusive. My spinal MRI was clear; no lesions. The MRI of my eye confirmed optic neuritis, and ruled out a tumor. My blood work had ruled out tons of other diseases. My spinal fluid had Oligoclonal bands, which are associated with MS, but can be caused by other inflammation. But, my spinal fluid also had a really high white blood cell count, which was not consistent with MS. A high WBC count usually indicates meningitis, which I did not have. She referred me for more tests and more blood work.
Between each visit, I’d try not to look at the results. And, each time we met, I hoped that she would finally have an answer. But, she didn’t.
We met again. She was still puzzled. The WBC was not consistent with MS, but everything else had come back negative. I’d done some research and the only other thing I could find that could be consistent with my symptoms and tests was cancer. It was never the first thing that came up if you looked up any of my symptoms or test results, but was the only thing left that could be associated with optic neuritis and high WBC count from my research. I’d been so scared of the idea of cancer, I hadn’t even said it out loud to people. I hadn’t asked the doctors. I’d given myself a panic attack. Then, I’d told myself, if they thought it could be cancer, they’d bring it up. But, no one had brought it up and no one knew what was wrong with me. I had to ask, for my own peace of mind. I debated back and forth in my head during my appointment. Then, I finally summoned the courage to ask. Could it be cancer?
She said it is one of the things that can mimic MS, but it is almost never the cause. She said she thought it was very unlikely, but told me we could do testing to rule it out. Then, she told me it would require three lumbar punctures. THREE?!? The lumbar puncture was the worst thing I had gone through in this entire process. I mean, it was up there with a C-section (although that may have been distorted in my brain due to the regency of the lumbar puncture and the faded memory of my C-section). I did not want to do that again.
The MS specialist told me that she meets with neurologists and the University of Washington Medical School every month to discuss their difficult cases, and asked if she could discuss my case with the other doctors. Of course! She also decided to send me for a chest x-ray to rule out another potential auto-immune disease and have my blood sent to the Mayo clinic to re-test for yet another auto-immune disease. If either of the other tests came back positive, I would have a diagnosis and a path forward. If not, she would advise me whether she and her colleagues thought I needed to get the additional lumbar punctures to rule out cancer.
So, I got the tests done, waited, and tried to relax. And then, my kid set the house on fire.