I love mysteries... I don't love being one

In 5th grade, my parents met with my teacher because they were concerned that all I would read was Nancy Drew books. The original Nancy Drew series, the 80s reboot "Nancy Drew Files", all the Nancy Drew/Hary Boys crossover books, and the choose your own ending Nancy Drew books. I wanted to be Nancy Drew. The teacher told my parents that my reading ability was not in question and as long as I was devouring books I could read whatever I wanted.

As a pre-teen and teenager I wanted to be Nancy Drew. It was years into my nursing careeer that I realized solving medical mysteries brings me a lot of joy, and that in my own way I get to Nancy Drew the heck out of things. What clniician doesn't love getting thattidbit of medical history that no one has- that nugget that leads to an unexpected diagnosis. Pulmonary embolism is one of my favorite diagnoses because it often mimics other things. For my healthcare friends, there is a great book entitled "Mastermind: How to Think Like Sherlock Holmes" that lends some insight into looking at things differently. 

So on to my medical mystery.  I'm sharing because if you work with me you have likely seen me as a patient this week, and I am open to other thoughts/suggestions. Here are the highlights:

- After fighting a cold (sore throat, cough, etc) for a week or so, on Saturday July 6  I noticed in the morning that my right cheek felt numb. When I say numb, I dont mean without any feeling, more that "pins and needles" feeling you get when novocain at the dentist is wearing off or a limb is waking up from being asleep. My motor activity was still intact. No slurred speech, no facial droop. My healthcare friends will understand this: I knew I would not consent to tPA just for this facial numbness, so I didn't rush to the ER. I was thinking perhaps Bells Palsy. I eventually went to the ER, got lab work including testing for Lyme, and antibiotics for possibly Lyme.

- Sunday July 7- I woke up and the numbness was still in my face but also down my arm. ER trip #2. CT and CTA (CT scan with contrast to look at the blood vessels) of my head and neck. Brain and carotids looked great. Then an MRI of Brain, C, and T spine. All totally blissfully normal. I was now on Valtrex in the event it was shingles or another viral issue, and Doxycyline. At this point we ruled out some of the scary things: stroke, MS, carotid artery stenosis, ALS, and a variety of infectious disease.

- Wednesday July 10- woke up and the numbness was going down my leg (now on my entire right side). A neuro exam showed I'm actually hypersensitive to pain but have the constant pins and needles (the good news there is I don't have to worry about getting an injury and not feeling it).

I ended up back in the ER so my very awesome neurologist could assess me, and they ordered a Lumbar Puncture. My cerebrospinal fluid was normal, except for a high number of lymphocytes (a type white blood cells) which suggests there had been an infection. 

-Thursday July 11- Developed a wicked spinal headache from the LP. I have a pretty high tolerance for headaches after 30+ years of migraines. This was pretty horrendous. Caffeine and hydration are the antidote. The alternative is a blood patch but we saved that as a contingency if the conservative management didn't work.

- Saturday July 12- Woke up to pins and needles on my left side. (Not nearly as bad as the right, but there nonetheless). Saw the neurologist and since motor function and reflexes were totally intact there wasn't really anything to do but wait. He still thinks this is a post-viral syndrome that will burn itself out. 

- Monday July 15- the spinal headache was still unbearable. Went to the ER where we tried IV caffeine (IV caffeine...all the coffee drinkers reading this are thinking yeeeesssss!). It was about the equivalent of 9 Mountain Dews. I was shaky but the headache persisted. 

So that led us to the blood patch. Not my idea of a good time but at some point you just want to feel better. 

Tuesday July 16- My back is sore for sure, but manageable. The numbness is still there. It hasn't gotten better since it started. As I've described to alot of colleagues and friends, my tongue feels funny so when I speak I feel like an intoxicated person who is trying to sound sober. (But my speech actually sounds normal). The ongoing opinion of neurology is that this is the effect of a virus I had previously and it should hopefully improve over time.

Lessons Learned

- Sometimes you have to find peace with uncertainty. This is definitely frustrating but there hasn't really been an alternative option. We've ruled out all of the big bad things, so that is the silver lining on which I need to focus.

- 4 ER visits in 8 days starts to make you feel like a crazy hypochondriac. Friends and healthcare providers who validate your medical concerns help you to feel less crazy. (and yes...I have asked multiple providers if this could be stress/psychosomatic and no one believes it is).

- The simple gesture of a doctor or nurse pulling up a chair to talk to you when they obtain a history or perform an exam makes all the difference in the world. I know how busy nurses and providers are, but so many have taken the time for me this week. 

So many thank-yous to my hospital family, my actual family, and my amazing friends. In the grand scheme this numbness isn't a huge deal...but the journey to ruling out the big bad neuro insults and the ongoing addition of symptoms definitely led to a few stressful days.