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 in my spinal fluid indicated something other than MS and confused my doctors. The neurologists consulted with an infectious disease specialist and ordered more tests. They were looking for an infectious disease or autoimmune disease that acted like MS, but could cause a high white blood cell count in my spinal fluid.
At my last appointment, the MS specialist sent me for a chest X-ray and sent my blood to the Mayo Clinic to test for two other autoimmune diseases that could be consistent with optic neuritis, my other tests, and my WBC count. She was going to discuss my case, which she reputedly referred to as a “puzzle,” with neurologists at the University of Washington Medical Center. If either of the tests came back positive, I’d have a diagnosis. If they both came back negative, she was going to let me know if they recommended additional lumbar punctures to rule out cancer.
In the month between neurologist appointments, I tried not to worry. I worked, played with my son, and celebrated a birthday and a very un-traditional Thanksgiving at home. I saw in my online chart that the chest X-ray had come back clear, ruling out one of the autoimmune diseases. I Googled the other, MOG. A positive result would be an answer; a relief. A negative result would mean uncertainty and possibly more tests. But, I was no longer scared. I wasn’t obsessively researching diseases and lab results. I wasn’t laying awake at night thinking of what ifs or giving myself panic attacks. I had calmed down and realized that I could not control what was going to happen. Worrying would not change anything. So, while I hoped I wouldn’t have to get another lumbar puncture, as my experience had been awful, I knew that I would do it if the doctors recommended it. Whatever was wrong, I needed to know; and the sooner the better.
Early on, I’d accepted that it was likely MS. I had wrapped my head around MS. My gut told me it was MS. But, all the doctors could tell me was maybe, maybe not, we’re not sure, your case is a puzzle. Every time, I was disappointed. I desperately wanted answers, a path forward, a plan. But, I stopped expecting it.
The follow up appointment with the MS specialist was on the phone. I was in my office. I closed the door, and waited for her call. I felt a dull excitement, small waives of nervous energy coursing through me. A small hope for answers, pushed down by a heave blanket of realistic expectations. My phone rang. I answered.
The MS specialist told me that both tests came back negative. She went on to say that she was so confused by my case, she decided to call the lab. She said she was on the phone with them for an hour. They double checked the test results from my lumbar puncture and found that my white blood cell and red blood cell counts had been transposed on the report. She said this made so much more sense, and was consistent with MS. I was relieved, but skeptical. What if they were wrong now? I asked if she was sure this information was correct. She said she was sure. She said she had planned to tell me we needed to do the additional lumbar punctures, until she called the lab. Now, she said, it made sense.
All my results were consistent with MS and every other possible explanation had been ruled out. But, she explained, in order to diagnose MS, there must be two separate incidents, occurring at two separate times. Brain and spinal lesions confirm incidents of MS. I had few brain lesions, but there was no way to tell when they occurred, so that counted as one incident. If I had lesions in my spine, that would count as a separate incident, but my spinal MRI was clear. She told me that there was some debate over whether or not optic neuritis should be counted as an incident, but currently they did not count it. If they did count it, she would diagnosis me with MS. But, there was not enough for an official diagnosis. In order for me to be diagnosed with MS, I have to have new lesions on my brain or spine.
My neurologist explained that I was at high risk for developing MS. Based on my symptoms and tests, there was a 70% chance I would develop MS. Given my situation, I could start a disease modifying therapy (DMT). She discussed the pros and cons of starting now versus waiting. I asked a lot of questions and took notes on a yellow legal pad. Each drug, the side effects, frequency, injections or pills. She said I could either start the treatment and do an MRI in six months, or I could wait and do an MRI in three months to see if there was any progression before deciding whether to start treatment. My head was swirling. Too much information; I needed time to decide. She referred me to the MS pharmacist for a consult, gave me the three DMTs she wanted me to consider, and we scheduled a follow up in a few weeks.
I was relieved. No lumbar punctures. No concern about cancer. No more puzzle or mystery disease. And, while this was not an MS diagnosis, it was as close as you can get to one. A plan. Options. A path forward.
But, first, I needed to research. Should I start treatment or wait and see?
1 thought on “A Path Forward”
Hi, this is WilliamL I know you from BelongMS
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