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Back for a bit! Also, about my back (spinal cord, to be exact)

February 10, 2014

I was flattered lately to get a few emails and tweets from people who are used to seeing updates from this blog. They said they missed my writing, my ideas! What a lovely thing to pass along. For a while, I suspended this blog since I was busy doing other things and couldn’t contribute to it with any regularity. Work, travel, chasing kittens, sitting on committees.

I also managed to be hospitalized with something called Transverse Myelitis. I got sick in the middle of a work rotation up north in Yellowknife (which was wonderful! the patients and staff there were a treat), a few weeks before Christmas.

antique_spine_illustrationI went numb and tingly from the waist-down one day. I thought it was related to my migraine or my migraine medication (known to cause tingling aka parasthesias). Maybe I was in denial, as I kept thinking it would just get better on its own. But it lasted, and after two and a half days, I finally talked to one of my colleagues and he invited me to the ER to get checked out. I left on the next plane and went to one of the hospitals I work at in Vancouver because Yellowknife didn’t have MRIs, neurology, or the support I needed. I was examined a few times, MRI’d, and admitted. There was something on my spinal cord. Long story short, I got a lumbar puncture (spinal tap), high dose IV steroids for 3 days, more MRIs, some blood tests, and got out in time for my birthday. I told just a few friends who were good at expressing care at a distance; I didn’t really want visitors or to tell too many people because I didn’t actually know what to tell them – I didn’t know what I had or whether to worry or not. I was very lucky to have my fella looking after me. I was allowed to be scared and he was calm beside me. He brought the comforts of home to the hospital and even obliged trying to put my hair in a pony tail (when I couldn’t do it myself because my IV wouldn’t allow me to bend my arm). That hairdo was terrible.

There are still tests ongoing and we don’t know what caused it. Right now I guess it is called “idiopathic transverse myelitis,” meaning an inflammation across my spinal cord which developed for unknown reasons. Hopefully it was a one-off, triggered by an infection perhaps, but given the results of some of my tests, there’s a high chance I’ll develop Multiple Sclerosis (MS) in the future. I’d never taken a ‘sick day’ since starting practice, and here I was away on disability for 6 weeks. It was pretty uncomfortable at first and emotionally it was challenging; not knowing what I had, and even having a label for it, not really understanding it was very hard. Also, probably TMI but when you can’t feel your genitals, going to the bathroom is super creepy! At least I didn’t have any weakness/paralysis. My case certainly could have been worse and I’m grateful that I can walk and talk and think and smile.

There are between 1 to 8 cases of transverse myelitis per million people , so there isn’t a lot written about it. Also, some of the tests didn’t really provide answers and other tests that were ordered were never completed. Uncertainty is a challenging thing and I’m glad I had the time off because I don’t think I would have been able to be completely devoted or empathetic towards my patients while I was trying to come to terms with my own illness. I was lucky to be able to travel and be with my fella and my family – good distractions from the racing thoughts. I’m 29 and I did not expect at this age to be considering picturing adding a wheelchair ramp to the home that we dream of building. I am far from that now, and it may never happen, but this has been a wake-up call to realize that health can change at any instant. I also realized how powerless one can feel in that time. And how bad hospital food really is.

It’s been a very good experience to be a patient. I’ve been admitted before for 5 or 6 days with tonsillitis but it was a feverish, drooling blur. I had Bell’s Palsy in 2010 and while it was scary, I was very lucky to have almost complete resolution.  Now, 8 weeks from when it began, my legs are much better and I’m back to work. When I have interrupted activity – walk, sit for a while, walk again – my legs get “jangley.” They feel like they are buzzing and vibrating and there is an apprehension feeling that they will collapse, but this is gradually lessening. Soon, I hope I’ll be back to hockey.

None of this was a secret, it just kept me busy and has probably changed me as a person and as a physician, I hope for the better. I still don’t fully “get” what is going on and probably will never get all the answers. I’ll get used to it, whatever happens next. Plus, I’ve got more important things to think about! In my six weeks off, I couldn’t quite sit still. In addition to lots of time with family, I submitted a paper to a journal, read a few books, and started a big project.

I don’t know how much I’ll be writing on this blog, but when it’s ready, I’ll post an update on my not-so-secret secret project, Less is More in Medicine.

 

(I share this not to seek sympathy, but because writing and sharing and hearing the stories of others will help me extract whatever meaning and learning I can from this experience)

8 Comments leave one →
  1. February 11, 2014 1:27 am

    Good for you! You are a remarkable person! Jeremy says that for the first few years after having spinal surgery (crushed vertabrae- a totally different issue than yours), all people ask after is “How’s your health?” A question which obviously gets old FAST. But no matter what happens, you are much loved and a strong person, which will carry you through any future health issues. I hope to keep hearing your stories as well. lots of blessings for you!

    • February 11, 2014 3:33 pm

      thanks Katana
      if I’m lucky this won’t be a chronic thing, but if it is, there are good people like you in my life who will help me keep on keepin’ on with a smile!

  2. February 12, 2014 3:24 am

    Keep your blog site going Jessica. (You’ve done a really great job with it). I’d suggest trying keeping your stress level low. (I know an oxymoron) But it’s really important. You’ve been on the go a lot! The combo of 2 episodes of neuropathy in a relatively short time is disturbing. Did you get any influenza vaccines before all this started? http://www.hindawi.com/isrn/neurology/2011/849757/
    varicella or rabies? Did you get scratched by a cat or kittens? Did you get bit by a tick? Been checked for TB or had an RPR. Ever been somewhere that you were in the water with snails. (Schistosomiasis). Have you had TORCH titers run. Been HIV tested.
    My STATworkUP compilation isn’t inclusive but the prognosis part says recover usually begins at 2 -12 weeks and may continue up to 2 years. Most who recover experience only one episode of TM (Recovery is unlikely if no improvement within 3 – 6 months. It is somewhat reassuring to hear you are improving somewhat.) Only 30% become wheel chair bound. Hoping all goes OK for you. Our ailments as docs add a dimension of understanding and compassion for our patients problems. Hang in there.
    Steve

    • February 12, 2014 4:25 pm

      thanks Steve, good to hear from you!

      Well I did get an influenza vaccine about 4 weeks before the TM set in; I probably had one back in 2010 about a month before my Bell’s started. I don’t have a record of it but I have gotten one each year. It is a bit odd that both times the neuro thing happened in early December Dec 10, 2010 and Dec 8, 2013 for onset.

      I had a “team” including lots of residents and other learners at the hospital. They were very good and kind, but I suspect because htere were so many cooks in the kichen, some things didn’t quite happen as planned. They talked about lots of the tests you mentioned but some of them were never done.

      Having only sensory issues, that’s certainly better from a current issues standpoint but correlates with a higher likelihood of MS. Same for having “just a tiny lesion” at T10, only one level.

      CSF basically normal,
      CSF had too few cells for immunophenotyping. CSF sent for cytology but it was not done because the doc didn’t phone the pathologist to authorize it. So CNS lymphoma however unlikely is still technically on the differential.

      Much better after pulse steroids.

      CSF positive for oligoclonal bands (more likely TM progresses to MS)
      normal Visual Evoked Potentials (no MS yet)
      normal head MRI in 2011 and in 2013 (no MS yet)
      follow up T-spine MRI will occur late this month

      I did get bit by ticks 2 years ago in an endemic region, but lyme serology was done and is negative. HSV 1 and 2 negative. They said they’d test for HIV but I don’t think they did as I was not given the results. Negative 2 years ago when I last donated blood. Water with snails? Perhaps yes in the Amazon in Ecuador. I don’t know if they did an RPR or VRDL. I am exposed to TB regularly with my northern work but always wear an N93.

      Scratched by kittens? All the time! We got two kittens from a farm back in October. Mentioned this but again my doc didn’t want to pursue it.

      I DID have night sweats leading up to the parasthesias. Also one day, a profound sweating episode during the day. No weight loss. I always have some scattered lympadenopathy, nothing new. The doctor didn’t spend much time re: the sweats so I don’t know why they happened.

      No ANA done as the team said there was too high a rate of false positives.

      I’m hoping that once I see the MS clinic (after my follow up MRI) I can run a few more of these ideas past them and see what they think. They see a lot of people who think thye have MS but don’t, so I’m hoping they’ll be able to answer my weirder questions and tell me a bit more about what to expect.

      We physicians… coping by reading and researching every angle. I don’t know if it’s a “healthy” strategy but I sure have learned a lot.

  3. papa permalink
    February 13, 2014 2:37 pm

    Glad to ser you are back in the saddle again. Keep on blogging. You’ve got a lot of support out there. Love mama and papa

    • February 13, 2014 4:33 pm

      a naer-luddite, on vacation, posting on my little blog!?

      thanks :) enjoy the rest of your trip and your fancy meal tomorrow.

      J

  4. February 14, 2014 11:50 am

    Were it me I think I’d consider the cat scratches, tick bites, night sweats, lymphadenopathy and try an empiric course of doxycycline to see what happens. Cat-Scratch Fever can do this stuff as well as TB (Potts Disease) Probably also get checked for immune deficiency.

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