A Test and No Answers
We're back from appointment #30 (neurologist #3). Today I had a single fiber EMG with repetitive stimulation--a test that most specifically looked to diagnose myasthenia gravis, or Eaton-Lambert, or a similar disease involving the junction between the nerves and muscles. This neurologist, as has been our experience with all the others we've encountered in this process, was wonderful. He had great bedside manner and had us laughing throughout the appointment--which is a surprising way to spend an hour-long test that is anything but comfortable. We actually had a team of four doctors with us: the neurologist, a resident, a neurology fellow, and a neurologist visiting from Mayo Clinic to provide education today. I joked that they should have had stadium seating. The testing was uneventful, and not as unpleasant as I had told myself it would be. We had feedback and an idea of results throughout the process. When the study finished, the neurologist summed up the findings: "Well, it looks pretty much normal. This is good news; it means we've ruled out many of the big dogs, including myasthenia gravis." I smiled and tried to be content with the knowledge that it wasn't any of the "big dogs." My face betrayed to Micah what he already knew: I was deflated. Another test. Another appointment. Another long list of diseases it wasn't. I asked what possibilities might still be on the table, and he said he would refer me back to the neurologist who had ordered today's study to discuss what comes next.
As has been the case all along, I hadn't expected to come away from today with a definitive diagnosis. I know this process takes time, and in neurology terms, we are very early in this journey. Still, each negative test leaves us feeling cut off at the knees, at a loss as to what could be next, nowhere closer to answers. It took me a few minutes after the appointment to come to terms with the results. By "a few minutes," I mean that in all honesty I'm still working through it. We went to lunch determined to enjoy a little time together before getting back on the road to home. As we sat eating, we discussed things in bits and pieces. Finally Micah said, "I hate to say this, but I think it's going to have to get worse before they can pinpoint what this is." The idea was nothing new to me, and I completely agreed. "I know. I think we're going to be in a bit of a free-fall symptom-wise for the next while."
We are discouraged, but feeling better now than we were a few hours ago. There are still possibilities, appointments, and tests on the horizon, I know. In the meantime, we continue to cope with the symptoms, carve out new ways to work around them, and wait. We're getting pretty good at the waiting.
As has been the case all along, I hadn't expected to come away from today with a definitive diagnosis. I know this process takes time, and in neurology terms, we are very early in this journey. Still, each negative test leaves us feeling cut off at the knees, at a loss as to what could be next, nowhere closer to answers. It took me a few minutes after the appointment to come to terms with the results. By "a few minutes," I mean that in all honesty I'm still working through it. We went to lunch determined to enjoy a little time together before getting back on the road to home. As we sat eating, we discussed things in bits and pieces. Finally Micah said, "I hate to say this, but I think it's going to have to get worse before they can pinpoint what this is." The idea was nothing new to me, and I completely agreed. "I know. I think we're going to be in a bit of a free-fall symptom-wise for the next while."
We are discouraged, but feeling better now than we were a few hours ago. There are still possibilities, appointments, and tests on the horizon, I know. In the meantime, we continue to cope with the symptoms, carve out new ways to work around them, and wait. We're getting pretty good at the waiting.
