Sunday, March 30, 2014

I'm a Zebra...Or...Lightening Struck More Than Twice

On top of everything else going on in the last week, my immune system is shutting down. I had my routine labs drawn at the end of January. One of the tests showed that my IgG4 is almost nonexistent. A repeat of the lab confirmed the results (In medicine, if we get a totally unexpected, weird lab result, we automatically repeat that lab. You never know when the wonky number is the result of a lab error. Better to be safe and recheck than to start chemo or other treatments when it was just a mistake in the lab. And just so you know, this is Good Medicine, not CYA Medicine.)

My PCP/neurologist at BMS set me up to see the local chief of Hematology/Oncology. He reviewed my history then gave me a look I've become way too familiar with over the years. He was confused. Perplexed. Intrigued. Now let me tell you...all the magazine articles and TV segments will tell you that you want a doctor that cares about you and that is interested in you. THAT IS NOT TRUE!!! They are wrong. Yes, having a caring, compassionate physician is a good thing. But you DO NOT want to be an Interesting Patient!!! Interesting Patients do not fit the mold. They are anomalies. They don't fit neatly into the puzzles we are mentally piecing together while we talk to you. They are the square pegs in the round holes. They get us excited to do research and look things up. They are not easy to diagnose and treat.

Interesting Patients are also called Zebras. There's a saying we are taught early in med school. It's actually one of my computer geek-husband's favorite factoids and quotes. No idea why. He just likes it. "When you hear hoofbeats, look for horses, not zebras" - the implication being that horses are common (like colds, ear infections, the flu), and zebras are not (like Ebola virus, West Nile, and rare, unnamed platelet aggregation disorders). When you find a Zebra, it is safe to assume that they will have only that one diagnosis. Zebras are rare. Multiple Zebras are extremely rare (ex. It would be extremely unusual and interesting to find a patient who had Ebola virus, West Nile, AND the rare platelet problem at the same time). Guess who is that Interesting Patient with Multiple Zebras? ME!!! It's so bad, my neurologist at BMS wore her zebra scarf this week at my appointment in my honor. It did make me laugh, because really? Only medical people would get the joke.

Anyhow, my immune system is shutting down. I have MS. And now I have pseudotumor cerebri. All unusual diagnoses that are not fun to live with or treat. Only the pseudotumor was easy to diagnose. The MS took 9 months from symptom onset to diagnosis, and I am considered a 'quick' diagnosis. We are still working on the immune system thing. I'll let you know more about that later. Until then, I have to get to the ballpark to see my Kid play center field. If you have any questions about this post or any others, I'll do my best to answer them from the Doctor or the Patient side, whichever is more appropriate.

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