Thursday, April 25, 2013

That Time I Almost Died Part V

We take you back to 2008...

It was a rough, teeter-totter week leading up to Monday’s neurology appointment. My mind has been teetering between regret about things not done and tottering toward vows to do things differently if my health ever improves. Luckily I’ve had some new symptoms to keep me company; painful spasming in my legs, feet, and toes, along with episodes of slurred speech. One day at lunch I reached for some pepper packets, and realized I couldn't seem to grip them. I watched in awed terror as they slipped through my suddenly useless fingers.

The neurologist’s facility was in Whitechapel; home of Jack the Ripper. I don’t want to say Whitechapel has changed since the murders, but let’s just say if Saucy Jack were around today, he wouldn’t be slicing up any pork.

Once inside the building, I was batted around like a loitering fly until I was eventually routed to neurology. The first thing I learned was that the person doing the examination wasn't the person I'd been told I was supposed to see. The second thing I learned was that their computer system had been down for several days, so the neurologist wasn't sure if he even had my charts. The third thing I learned was that there wasn’t going to be an MRI that day.

The neuro guy and I went through a Q&A similar to the one I’d been through with the hospital doctors. He seemed mostly unworried about my complaints, and didn’t seem to grasp (at least not openly) how weak and generally diminished I’ve become. This seems odd to me now, since his first observation was that I had limped my way into his office.

He indicated I had a few “borderline” results in my bloodwork, but nothing that really stood out. My blood platelets, iron, and calcium were “borderline,” but not exactly abnormal and nothing to be alarmed about. He kept alluding to hematologists, and seemed convinced almost from the get-go that my decline was more of a blood issue. The only time an MRI came up was when I brought it up.

He wondered aloud if I had caught some sort of exotic viral infection that had ravaged my immune system. I can’t even recall a stiff bout of sniffles over the last 5 months, so to me this sounds unlikely.

Dr. Feelnothing all but rolled his eyes when I repeated the MS theory, which is obviously a good thing. The last thing you want to h ear when you mention a hopeless diagnosis is, “MS, thank you! That’s the disease I was thinking of! Couldn’t remember the name.”

While I’m very happy he didn’t detect anything MS-like, given his overall demeanor, part of me worries that has as much to do with lazy investigation as it has with the chance that MS is the culprit.

Before sending me off to get milked for several more tubes of blood, the neurologist said in 2-3 weeks I would receive letters updating me on when I could see the necessary specialists. In other words, I have to wait 2-3 weeks to find out how long I’ll have to wait to see someone again. If the tortoise and the hare had raced in the UK, the tortoise also would have stopped off for a nap.

I haven’t even mentioned yet what an ordeal it was just to get this fruitless appointment. If you remember, my NHS (“universal healthcare”) GP let me go last week with the assurance I’d get a call from the neurologist. That call never came. I had to leave five increasingly frantic messages with multiple people over the course of the week before finally hearing back last Friday afternoon. And remember, this was after the GP felt it necessary to explicitly consider MS; so presumably, the MS theory was forwarded to the neurology folks. I gather then that possibly having a condition debilitating enough to headline its own telethon still doesn’t make you a priority. with NHS ("not for profit healthcare").

I booked another emergency appt. with my NHS GP for this afternoon. My plan was to bellow until her ears rang with a plan for getting me faster treatment. Her response: “There’s nothing I can do to speed up the process. I am sympathetic to their not considering it urgent. Your systems are very vague. First it was the shoulder, then orthopedic, now the dizziness and the weight loss…”

So I because I have a lot of symptoms that continue to grow in number and severity, this actually makes me less of a candidate for priority treatment. Wouldn’t you think it’d be the opposite? Wouldn’t you think a patient whose condition keeps deteriorating in unconventional ways would be sent to specialists faster in hopes of preventing the appearance of yet more symptoms? “There’s nothing I can do,” says my GP. Had I just walked in from the beginning and attributed everything to Planter’s Wart, perhaps I would have glided through the system.

I am really afraid of dying in London. Not just because of the whole death part, but because I’m afraid not even death will work properly in this soggy and unknowingly backward dystopia. I’m afraid I’ll die and instead of heading towards the light I’ll hear an announcement saying, “Due to improvement works, there are severe delays on the River Styx."

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