Diagnosis Isn’t a One-Time Thing
“That’s a lot of blood,” I said to the lab tech as she filled up vial number 10.
She laughed but nodded. It was a lot of blood.
When I came in with my orders — a stack of papers weighing more than the homestead exemption paperwork that required two stamps to get across town — the tech at the front desk raised her eyebrows. As the labels for the tubes began to print, all three of the techs behind the desk looked shocked. I wasn’t. Those labels represented the search for answers that most of us with a chronic illness know well.
Over the previous five days, I’d had 13 vials of blood drawn (to supplement the six drawn in March) and dozens of x-rays. As I recounted my time scurrying between doctor visits, lab tests, imaging scans, and blood work to the lab tech, I experienced a moment of medical déjà vu. For a split second, it was 2008 all over again.
Until that moment in the lab, I’d remembered my 2008 journey to migraine diagnosis as relatively straightforward. And, in some ways, it was. My doctors had a working hypothesis of what was wrong with me (migraine), and they simply put me through a variety of tests and scans to rule out other things before finalizing my diagnosis. That’s very different — and much simpler — than using the tests as a basis for a hypothesis. But it still took months before “chronic intractable migraine with aura” showed up on my chart.
Diagnosis is rarely simple
Getting diagnosed with what can be for some a chronic, progressive brain disorder is never simple. While I received an official diagnosis in relatively short order, that diagnosis has continued to be amended throughout the years. And many of those amendments were a long time coming.
It took two years of hearing tests, let’s-see-what-this-does medication, and visits to ENTs, for instance, before the doctors were satisfied I didn’t have Meniere’s disease. They then added “with migraine associated vertigo” to my chart and moved on. That diagnosis will likely change again, as it seems my vestibular migraine is really MBA (migraine with brainstem aura), though many patients with chronic migraine will concur that getting a long-time doctor to modify an existing diagnosis can be difficult.
Why it matters
Doctors don’t want to be wrong. That’s why it takes so long to get a diagnosis in the first place — whether you’re being diagnosed with an accurate version of migraine or something completely different — and why it takes even longer to get an existing diagnosis updated. The problem, of course, is that diagnosis matters.
We all want to know what’s going on inside our bodies. We want to know the expected symptoms, the long-term prognosis, and if what we’re currently experiencing should be considered our new “normal”. That was true for me in 2008, and it is true for me now. But aside from the understandable desire to have knowledge of our own bodies, the diagnosis matters objectively. An effective treatment hinges upon it.
Differences in treatment
Treatment for episodic migraine varies dramatically from treatment for chronic migraine. Treatment for hemiplegic migraine can differ from treatment for migraine without aura. Someone with migraine and Meniere’s needs completely different drugs than someone with vestibular migraine.
We’ve all played the waiting game
That’s why it matters. And that’s why it takes so long to get. Looking back, I hadn’t remembered how frustrated I felt in 2008 awaiting that diagnosis — all the while going from MRI and MRA to cervical x-ray to EEG to blood work. Now, undergoing the same thing again, I do. For anyone out there still awaiting confirmation of migraine or of a specific type of migraine, please know you’re not alone.
All of us with migraine disease have been where you are. We’ve all spent hours getting poked, prodded, and scanned. We’ve all held our breath waiting to get confirmation of what is going on inside of us. For some of us with a particular subset of symptoms, that journey continues. For others, the diagnosis is firm. Either way, we understand. And we’re here, holding our breath for you, hoping you get answers—soon.