A couple of days ago, I started noticing some strange numbness in my legs. Some mild pins and needles, too, a little like stripes down my legs had fallen partly asleep, and weren’t waking up all the way. Seemed odd, but I figured I’d wait 24 hours and see whether it improved.
24 hours later, it worsened slightly in my legs and began to spread upwards, to my arms and hands. I went to a chiropractor that a friend recommended, thinking I’d pinched a nerve or slept really, really profoundly badly on my entire back, or something. No dice.
Thanksgiving Day I worked and watched things progress from only-okay to kinda-crappy, but by the next morning, when part of my tongue had gone numb, even I couldn’t ignore things any longer. My primary doctor’s office was still closed for the holiday, so at Kate’s urging, off to the emergency room I went. Or tottered, really, because by this point my legs were getting numb enough to make walking feel a little like balancing on stilts.
I got triaged and tested and peed in a cup and gave blood samples and described the progression of things to a series of ED docs and neurologists. I got a lumbar puncture, which I will not recommend as a fun way to spend a Friday night.
And the upshot, so far, is that I’ve got Guillain-Barré Syndrome. (As did FDR and “Refrigerator” Perry, per Wikipedia.) It’s an autoimmune disorder, so it’s nothing communicable. My own immune cells are stripping the myelin sheathing off my nerve cells, which diminishes the nerves’ ability to transmit signals. Uncomfortably numb, indeed.
The good news: treatable, and in a majority of cases, fully reversible. The bad news: five days of IV-delivered treatment followed by physical therapy followed by probably weeks of slowly recovering sensation and motor coordination. My tongue’s being numb is having the weird side effect of making everything I eat or drink taste horrible and bitter; that’s the effect I most want to go away right quick. I’m clumsy, walk like a wobbly giraffe, and tire quickly. My heartrate is hovering around 90, which is well higher than normal for me.
I’ve been admitted to the Neurology department at the hospital where Kate works: New York-Presbyterian. I’m in an 8th floor shared room with a gorgeous view of New Jersey’s bluffs and the GW bridge. Kate’s been marvelous. I’ve learned which sticky leads go where on my chest, and made several neuro residents frustrated with my utter lack of reflex action. (A lack which long predates this syndrome, I eventually tell them, if only to make them stop whacking me with the little rubber hammers.)
My spirits are … middling, but generally accepting. I really wish this wasn’t happening, but it is. I’m well and truly strapped in for whatever the consequences are. (Which is good, because I don’t have a lot of choice in the matter.)
I’ve got my iPhone, for which I’m grateful, as it’s what I’m using to type this. The little keyboard actually works better for me now than my laptop, since it works with no tactile feedback - feedback I’d only be missing with my increasingly numb fingers.
Nobody’s promised anything, but it sounds like the symptoms may keep increasing for a bit before reversing themselves. So it goes.
I’ll be checking my mail periodically, but may be a little terse or slow; it’s taken a while to tap this out.
I believe I’m going to be okay, even though I don’t feel very okay just now.