If you've ever watched House on TV, you know that in every other episode "vasculitis" enters into the differential diagnosis. If you've never watched it, you should know that Hugh Laurie plays the drollest misanthrope ever to grace the small screen; that it's a medical detective show featuring Dr. House solving impossibly complex cases; and that vasculitis should practically get star billing.
I used to joke about how the diagnostic trail always led through lupus, lymphoma, Guillain Barre ... and vasculitis. (Oh, and the mandatory break-in into the patient's home to see where he or she was lying about their medically relevant recreational drug use/sexual history/other vices and secrets.)
I'm not laughing today, but I am grateful that I googled vasculitis months ago so I could follow the plot of House. Because vasculitis is the leading candidate for what's wrong with me.
Initially, the radiologists' report came back suggesting MS, with vasculitis mentioned as another possibility. However, because the report was frustratingly vague, I badgered my family doctor for clarification. That resulted in a second, more experienced radiologist reading my scans. His opinion was that the lesions in my brain would be unusually small and atypically located for MS.
Now, MS could still be the culprit, and I had some very bad hours in between my two conversations with my doctor. Right now, though, I think vasculitis is probably the correct call. To sort it out, I'll have to undergo various unpleasant tests, and it's possible I'll have to park in the hospital to get them done sooner rather than later. I'll obviously go to Columbus for all of this; Ohio State has an excellent neurology department.
If the OSU guys come up with a working diagnosis of vasculitis, I'd get high-dose corticosteroids (a prednisone relative). Not a picnic, but the prospects would be good for recovery, as far as I understand. (If you start googling "primary CNS vasculitis" or "cerebral angiitis" or variations thereupon, you will find some pretty alarming stuff. I don't recommend you do it. My situation, so far, seems to be serious but not nearly as dire as what you'll find on the intertubes.)
If vasculitis is ruled out, then we'd be back to a workup for MS.
Blogging may be thin through all of this. If I can get to feeling a little better, there's all sorts of stuff I'd love to say. Concentrating is hard, though, and most of my spare time and energy is going into researching my situation.
Yes, I know all that googling can be unhealthy. But I wouldn't have known how vague that first radiology report was, except for my research. I wouldn't have pressed for more answers. I wouldn't have known which answers to press for. And that would've left us with a possible red herring and perhaps a harmful delay in further testing. (Time is more urgent in CNS vasculitis than in MS.)
I've been terrified and I'm still scared. But I'm almost equally swamped by the outpouring of love and support from every direction:
My husband, who is dealing with much of the domestic burden and letting me know that he's there for me no matter what.
My family in California, who are willing to hop on a plane if it'll help.
My colleagues, who have already taken on extra burdens and will carry my classes when needed.
My neighborhood friends, who've held my hand at the doctor's office, brought flowers, and swooped up the kids so I didn't have to act brave the whole time. (I do brave rather poorly.)
And not least, my farawy friends who've poured those same impulses of love and kindness into emails, google detective work, and quiet worry.
For someone with blobs in my brain, I'm greatly blessed. So very blessed that I'm tearing up - again! - as I write this.