NB: *The conversations about annual influenza vaccine, like anything, will vary from patient to patient. For some, the benefits may outweigh the risks. For others, no. We can always use more/better evidence, but using whatever information we do have, everyone deserves to have a conversation about their options.*
Lately I have been doing okay. It seems I will forever have numbness in my legs. It’s not bad; easiest way to explain the sensation is an example: when I was laying in bed, my partner had his hand on my knee. I thought he was laying on top of the sheets, touching me through them. But his hand was directly on my skin. So, it’s not bad, it’s just strange and a bit creepy feeling at times. At other times, I’ve had worsening of the numbness, a vibration sense in my legs, hands numb for a few months, a lightening feeling down my legs when I bent my neck forward, etc. A lot of this is periodic and some of it doesn’t “fit” with the spot they found on my spine. That’s why I was/am being investigated for MS; not everything could be explained by the inflammation of my spinal cord at the tenth thoracic (T10) level. However, so far, none of the scans have shown any new spots (“lesions”). I’ll have another scan of my brain next year to see if I’m getting more spots. If so, I have MS. If not… maybe this was a one-off event, and can be called “Idiopathic Transverse Myelitis.”
I was at a conference recently and heard a wonderful talk about incidental lesions in the brain that are found on MRIs. I could relate personally and professionally to this issue and chatted with the Dr dr Al-Shahi Salman afterward. I briefly mentioned my own experience, all the incidental findings that had come up and how each had to dealt with or consciously ignored, and that I was still having sensory weirdness. I loved what he said, essentially: ‘well, it IS the nervous system and it’s complex. It’s probably transverse myelitis and you just have to think of that weird stuff as noise.’ A sensible and reassuring approach, for some reason this phrasing made me very optimistic.
When I got back to Canada I started reading about Ebola, and of course, the annual push for healthcare providers to get vaccinated against seasonal influenza. Then I read about some docs and nurses at my old stomping grounds who didn’t get the shot and were adamant that health care workers should not be forced to do so (this article from April 2014, had resurfaced).
Since I started medical school, I got my influenza vaccine every year; I was doing my duty as well as protecting myself. The vaccine seemed basically harmless and I was willing to take the tiny risk of side effects in order to gain the benefit for myself and patients. If I died of the flu (or if I transmitted it to a patient who then died of it), I would kick myself for not getting the vaccine! “Not dying” seems clearly good thing, and you would have to be an idiot to not take an easy action to prevent a horrible outcome.
Upon reviewing the evidence, I am no longer convinced that the flu vaccine has the significant benefits I once assumed. I am very much pro-vaccine where the evidence shows it is safe, effective, and has helped to eradicate disease (e.g. polio), but I don’t know if I feel the same way about the seasonal influenza vaccine for myself.
I have read a lot lately about whether the influenza vaccine is “worth it.” It seems that there is little evidence that the vaccine actually helps prevent people from getting sick or dying, and even less evidence that giving it to healthcare workers helps them or their patients in a meaningful way. For a snappy review of this, read Margaret McCartney: What use is mass flu vaccination? (BMJ). We know it takes somewhere between 40 and 70 people to get the shot in order to prevent one case of flu, and that the vaccination seems to have no impact on days of hospitalization or sick days from work (Cochrane). Also vaccinating those who work in Long Term Care (LTC) facilities does not decrease complications (eg. death) in the LTC patients (Cochrane).
For kids, we don’t have much information about outcomes, but we do know the vaccine decreases cases of influenza and that the nasal vaccine might be more effective at this (Cochrane). For people with asthma, there may be at least a small benefit (Cochrane).
I’ve gradually become more aware that sometimes we fail to fully appreciate or anticipate the harms of something, instead thinking ‘doing the something is better than doing nothing’ and also that there are some things we know are really great, but we don’t do them enough! That’s what my Less is More Medicine site is all about. The other part of the reason I’m re-thinking the vaccine this year is that my own health has changed.
Now, I have a pretty strong reason to consider whether the flu vaccine is the right choice for me. As you may have read here, I have developed weird neurological symptoms over the past few years; the first episode was Bell’s Palsy in December 2010 [blogged at Part 1, Part 3 with Video, and so on] and the second, which I wrote about above, was Transverse Myelitis in Dec 2013 (with some “noise” after the first event) [first blog post about it].
Both of these major neurological events were within several weeks after I had the flu vaccine. I didn’t really think anything of it at the time. If my Bells Palsy and Transverse Myelitis were the beginnings of MS, then I would not think it an odd coincidence that they both occurred in early December of different years. As it stands, both conditions remain idiopathic. It seems like I may not have MS.
There are case reports of transverse myelitis developing shortly after influenza vaccine. Statistically, these are likely to be coincidences. There is some correlation between vaccination and transverse myelitis but it’s hard to tell what that means. Probably the vaccine didn’t trigger my neurological symptoms. But if I’m still having “noise,” it could ‘confuse’ my immune system, or at least that is what I’ve been told; when I asked my MS neurologist whether it would be safe for me to continue getting the flu shot annually, and he said no, probably better to avoid it for now. If my condition is autoimmune, and things are still settling down, it would be better not to feed any fire. Okay, I guess this makes sense, and really there is no data in this area, so level E evidence aka “Expert opinion” is the strongest thing I have to go on.
What would be the mechanism by which a vaccine could make my neurons angry? It’s possible that there some cross-reactivity with flu antibodies attacking some antigen in my myelin. I.e. when I get vaccinated, my body’s army develops specialized forces to kill X (eg. flu). I develop a bunch of Anti-X soldiers. They go out hunting and they kill anything that looks like X. Unfortunately for me, my myelin (spinal cord/nerve covering) happens to have something that looks a whole lot like X. The special soldiers see it. They attack it! It’s not flu but it looks a lot like flu, so the special forces think they are doing me a favour but really they are not. My spine gets inflamed, my body tries to repair the damage, and I develop symptoms.
Maybe? Or probably not, and my condition has nothing to do with the vaccines I got and future vaccines present no higher risk of neurological effects than they did before. Of course I must consider the risk of transmitting infection to my patients, and whether this vaccine decreases that risk. Then I must consider the risk and benefit to me; if I’m convinced that the benefits outweigh the harms, I’ll get the shot.
*The conversations about annual influenza vaccine, like anything, will vary from patient to patient. For some, the benefits may outweigh the risks. For others, no. We can always use more/better evidence, but using whatever information we do have, everyone deserves to have a conversation about their options.*
Thought it was time for another update in my “do I have MS? or is it some other weird neurological disorder” adventure.
In a sentence: I am having some more symptoms but they are minor, my imaging doesn’t show anything new, but my specialist thinks I have either recurrent transverse myelitis or MS.
I’ll start with a review of the timeline
- Dec 2011 Bell’s Palsy (may be unrelated) treated with steroids and antiviral. Distance vision a bit blurry at the end of the steroid course, returns to normal in a few days. Face almost “normal” in 8 weeks. Personality still weird.
- Dec 2013 in Yellowknife legs numb, wait a few days “it’s my migraine or my migraine medication.” See the ER doc and he sends me home to Vancouver
- Dec 2013 at hospital, Neuro team sees me; lesion at T10 on MRI. Admitted to hospital. MRI head and c-spine normal. LP shows no infection. Tests for HIV, Lyme, HSV negative. Cytology is not completed. IV steroids x 3 days. Off work x 6weeks, numbness gradually improving. On oral steroid taper for 10 days. Lose my distance vision (can’t focus) on the 7th day. Neurologist says it’s not the disease just the steroids.
- Jan 2014 L’Hermitte’s phenomenon started (lightening down legs when I bend my neck forward, chin to chest)
- Feb 2014 follow up T-spine MRI shows T10 lesion slightly improved but still there/enhancing
- March 2014 in Yellowknife again, I notice my right leg getting much more numb suddenly. “There’s something in my Sorel. Oh. It’s my foot.” Get home to Vancouver, can’t get in to see my neurologist, MS clinic has lost my referral, go to GP who is lovely and reassuring
- April 1, 2014 April fool’s. I see MS doctor, they order steroids IV for my recent flare, labs, follow up in a month. Hilarious attempt to work and have IV steroids at medical daycare in the hospital where I work. Surprisingly works out. Lose distance vision the day after my tx is done.
- May 2014 MS doctor. Things are going great, only get numbness/tingling/vibrating in my legs when I walk vigorously. Tests for sarcoidosis and lupus and NMO are negative. “This could be a one-off transverse myelitis after all” Hope. Basically: optimism.
- end of May 2014 at a conference in New Mexico, wake up and arms are numb, 3 days in a row. “Slept funny” “must be the hotel beds” No.
- call MS clinic and they move up my MRI to July; MRI head and c-spine done at end of July
- Aug 2014 see MS clinic . . .
That brings me to yesterday and today’s appointments.
Yesterday I saw an MS Fellow first. History taken, examined again. On exam, I have decreased sensation to sharp (pinprick) in distal arms/hands. Surprisingly – I hadn’t checked in a long time – it is also still decreased in my legs.
She reviewed my scans. Maybe “artifact” in the brain stem. A radiological artifact is just like a glitch in a video, something caused by the machine or movement of the patient. The resident mentioned that the “non-specific lesion in occipital lobe” is stable compared to previous scans. This lesion was never mentioned to me before. Hmm… Lots of silence as the Fellow scrolled through my images and Ian and I did our best to stare at our feet. Eventually, he and I made quiet conversation, passing the time. I would have welcomed rambling from the Fellow.
Then MS doc came in. The long and short of it is that he doesn’t know what I have or what to do about it. If it is MS, we should treat now and with MS drugs. If it is not MS, it could be recurrent Transverse Myelitis which is rare, and we should treat with different drugs. My scans showed no new (definitive) lesions, so they cannot label me as MS or recurrent TM. Yet.
[EDIT: I forgot to say that the MS doc said the lack of lesions on scan is not conclusive; often with mild sensory changes (what I have) a tiny lesion is the cause and is missed on MRI]
We want to treat, but what are we treating?! Are the side effects worse than disease? I explained my bias: as he rattled off different drug names “I like this one, it’s good for people with active lifestyles, and you can get pregnant on it” etc. all I could think of were all the patients I had seen with horrible side effects. I mentioned a patient who was on Mycophenolic acid, who developed disseminated CMV and was quite sick. I didn’t say it, but I was also thinking of a patient who was on Rituximab who had severe bone marrow suppression and lymphadenopathy. I explained “my bias is that in my work (as a hospitalist), I see only sick people, people who have the bad side effects of these drugs; I don’t see the good outcomes.”
MS doc suggested a pulse of steroids. I questioned whether this would change the outcomes and he said “maybe.” I might get relief for my tingly hands fairly rapidly. And IF they get a whole lot better, that might imply a spinal lesion, as these tend to be more responsive to corticosteroids. IV has been a hassle in the past and so I asked if we could go with oral (prednisone). Yes. 650mg (correction) twice a day for 3 days. “Okay, but I’m worried I will lose my vision again. I kind of need some reassurance that my vision will recover.”
Today I saw a neuro-ophthalmologist at the MS Clinic. She examined me and seemed surprised that I passed all tests with flying colours. I guess most people going through the MS clinic already have some visual issues. I asked about the steroids and blurred vision, telling her that I was “okay” with it so long as she could reassure me it would not be permanent. She explained that while she could not guarantee anything, she had lots of patients who had this issue. She described the mechanism of increased salt/water and sugar, and how this might distort the lens and change its refractive characteristics.
She did my intraocular pressures and they were normal, reassuring me I don’t (yet) have glaucoma. She offered to see me again while on prednisone so that they could measure the change in my vision but I was satisfied enough with her explanation. I did, however, leave the clinic with a plan for visual field testing and a picture of the retina to be done in the next month or so. This will be a baseline and it may help in diagnosis if grossly abnormal.
So now, I have new symptoms but I am no further along in the process. I’m lucky to have such experts looking after me and I realize the disease has to declare itself before anyone can be expected to know what to do.
It’s just hard to plan for the future not knowing what might happen. Though I know it is impossible for anyone to know the future, it was something I was blissfully unconcerned about before. Until this year I felt I could do anything I wanted and would just go for it. Now, I’m afraid. And I’m ashamed that I’m afraid. I’m supposed to be strong. I’m supposed to forge ahead no matter what. However, I don’t want to make plans that I can’t keep and let someone (including myself) down. For example, I’m supposed to go volunteer at a clinic in Zambia for 3 months next year. I am currently physically able but I wouldn’t want to go if I was going to get sick while I was there, or if I’m on some sort of IV treatment that has to be done in the middle of that trip. And I wouldn’t want to leave them high-and-dry without a physician. Maybe it’s better just to cancel.
Now that I know I have some kind of illness that seems like it is going to surprise me on a regular basis, I’m thinking in a way I never imagined I would before. Should I expect a long healthy life as a working GP? Do I need a less physical job? Should we build a ramp to our house just in case? Am I ‘disabled’? Is my fatigue related to the fact that I work a lot or is this the MS fatigue everyone talks about? Is my mood lower now than what I remember because I’m learning to cope with something new or could I be depressed?
Last year I read “Man’s Search for Meaning.” Viktor Frankl, the father of Logotherapy, wrote:
When we are no longer able to change a situation, we are challenged to change ourselves. . .
The one thing you can’t take away from me is the way I choose to respond to what you do to me. The last of one’s freedoms is to choose one’s attitude in any given circumstance.
I know that the only thing in my power is the attitude with which I approach all of this. It’s just hard to be optimistic, realistic, pragmatic, open, stoic, vulnerable, and “ok,” all at the same time. When you realize that you might have to make concessions, it’s hard to accept. “Oh you can still do anything you want despite it…” Yes. It’s not a physical disability that will stop me. It’s my own mind that might ultimately be the thing I can’t overcome.
Thus, main treatment is not some immunosuppressant or some vision-whackifying corticosteroid, but rather an injection of logotherapeutic thinking.
My first peer-reviewed publication is out, and I’m proud to say the case study made the cover of the British Columbia Medical Journal (BCMJ).
If you are wondering how I can possibly justify diagnosing weird fungal infections with my “less is more” approach to medicine, read this post on my Less is More blog.
If you want to check out the article, read it on the BCMJ’s site.
I haven’t written in a while, but I thought it was time for an update. This blog is taking/has taken more of a personal direction while most of my professional stuff, on the subject of “right care,” is posted on the Less is More blog.
For what it’s worth, I still read a ridiculous number of medical articles, some of which get a reflection or précis treatment on that blog, and the rest of which might appear on my DrOttematic or Less is More Med twitter feeds.
Our kittens are now a year old, they really like going outside and have learned how to jump out of second story windows; perhaps I’ll learn some veterinary medicine :(. Ian’s flying a different plane now. The work is more rewarding for him and he has a better schedule which makes it easier for us to travel and plan fun things. The weather in Vancouver has been wonderful and I now have a used folding/electric bike to toodle around on as well as a stationary bike for rainy days. This week I had enough time off to get together some Emergency Preparedness supplies; it has been on my “to do” list for a long time, but the tips I got at a Wilderness Medicine course, Ian’s recent reading about the Cascadia Fault, and having a few days off at home prompted me to get organized. There are still a few gaps; I’m certainly not a “panicked prepper,” but it feels good to know that if the power goes out or we don’t have running water for a few days, we’ll be self-sufficient.
This year has been a bit subdued (aka less exotic) compared to previous ones, but we did enjoy a week chasing lava on Big Island, Hawaii in January, a nice quick trip to Quebec City during Carnaval de Québec in February, a week in Toronto in March (while Ian was training to fly a new airplane), a visit to Sidney BC including a day trip to Botanical Beach at low tide in April, and a trip to New Mexico at the end of May, where we explored national parks and monuments before I began a wilderness medical conference in Santa Fe. The conference was fantastic and highly practical both for my northern work and for personal safety/health while enjoying the wilderness. Our next big trip will be this fall – we are aiming for Iceland.
Things were going okayish, then I had a little relapse (?) of my Transverse Myelitis in March while I was in Yellowknife. Saw the MS clinic (see prev post). Saw them again in early May. Things were pretty good actually; I even had a day where I didn’t think about my condition at all since I had no symptoms that day. At the clinic, for the first time, my physician said “well, maybe it isn’t MS.” Things were continuing to improve and I was so very close to ‘normal’ until during our trip to New Mexico I woke up with numb arms. Numb like I had slept funny on them. And honestly, that is what I told myself for a few days. “Oh I just slept funny. Hotel beds, who knows.” I was obviously in denial that it was anything significant. Home from the trip, I discussed it with my dad (a nurse) who is very good at telling me like it is. He told me I should call the MS clinic. So I’ve done that, and they will eventually (“soon”) scan my head and neck, since it’s likely I have a brain or cervical spine plaque, and that my diagnosis is MS after all. Technically my neuro issues have to be disseminated in time and space to be diagnosed as MS. We have time (multiple different events at different times) but not space (there was only one lesion on my MRI at T10). I would be surprised if there is nothing on my head/neck scans, and per previous discussion, it sounds like my specialist will suggest aggressive, early treatment to prevent more MS plaques from building up, thus reducing further weird neuro symptoms. Now I just twiddle my thumbs and do the impossible dance of not stressing with uncertainty, aka keep busy and try to ignore it.
Given my health stuff and because we have a lovely place in Vancouver to live (and that’s where my fella is most of the time), I’ve been going up north a little less. This year, I just have a few trips to Nunavut and the Northwest Territories. Next week, I’m off to Yellowknife for some clinic and then hospitalist work. I quite like hospitalist work. I really enjoy the older patients, working in a team, and the ability to divide up my time as I see fit. I can devote lots of time to the sick patients or those with new diagnoses, and I can spend little time with the stable, well patients. It’s not as “cowboy”/adrenaline-heavy/glamorous as emergency medicine, but it’s also less stressful, and I think I make more of a positive impact in people’s lives. Also, my regular commute in Vancouver is a 20 minute walk; can’t beat that for health or sanity!
Stemming from a previous interesting case at work, next month should see the publication of me and colleague Dr B’s case report in the BC Medical Journal. It’s my first peer-reviewed article and so you can bet I’ll be posting a link here to showcase the great case and our hard work!
Health Policy Stuff:
Speaking of attempts at positive impacts, I’ve been devoting a lot of my “free” time to health care policy work. I’m on medical policy committees at the local, provincial, and national scale but I’m still learning the ropes and wanted to do something a little more hands-on. I started up the Less is More Medicine website this spring and have been following it up with other related endeavours trying to spread the word about this approach:
- interviews (in Santé, & soon The Medical Post)
- a research project (something around Choosing Wisely pioneered by a hospitalist colleague)
- talks (at UBC for the Medical Students in DPAS with Dr James McCormack of The Best Science (BS) Medicine Podcast, a solo one at Family Medicine Forum in November 2014 in Quebec, and tentatively at two other conferences in the spring)
- papers (ok ok all in draft form, but I’m constantly writing things..)
It’s rewarding to be able to sink my teeth into something I really believe in. “Less is More” is certainly not my only interest but it is a pretty exciting time to be involved. Many before me have done incredible work in the area and I see my role as spreading the message as well as supporting and encouraging physicians or patients to experiment with thinking this way.
Words cannot fully express my enthusiasm and gratitude for an opportunity that I have next week. I’ll write about it here or at the Less is More blog soon.
Today I officially join the ranks of the chronic, autoimmune, neurological patients.
I saw the experts at the MS clinic. A Fellow from the US, the head of the clinic, a remarkably efficient nurse, the quick and able lab tech at the hospital, and finally the medical daycare nurses.
Short story: no official diagnosis yet, and may never have one. Have had 2 or three events proving dissemination over time, not sure about dissemination over space. Both are required to say “YES, MS! We factor in my previous Bell’s palsy, my first episode in December, the emergence of l’hermitte’s sign (bending neck forward sends a zappy/tingle down my legs) in January, and what seems to count a relapse in early March. The only radiological lesion is at T10 on my spinal cord. Head normal so far. So I don’t have dissemination over space, technically, not yet anyway.
We discussed the differential diagnosis and were able to rule out a few things with the tests done so far: HIV, Hep C, neurosyphilis, HSV, cryptococcus, lyme disease, TB; with history and the pattern of things and statistics, we concluded that brucellosis (exposed), cat scratch fever (scratched), scistosomiasis (swam in amazon), lymphoma are all quite unlikely. Basically it’s inflammation, not infection or cancer, using the information we have so far. What kind of inflammation is less clear, but it’s acting like MS.
The summary/plan is:
- some lab tests today to rule out NMO (my clinical picture and MRI don’t fit this, so I won’t explain it more), neurosarcoidosis (pretty rare, but the Fellow said that if a follow up MRI of a lesion is still enhancing aka lights up with MRI dye a few months after the original symptoms (and mind did, though it was less lit up), this is more characteristic of sarcoid than MS; one test related to sarcoid can also rule out lupus
- might have “recurrent Transverse Myelitis” – pretty rare; treated slightly differently than MS, more general immunosuppressants
- statistically, MS is most likely though it’s not easy to label me with that, yet
- boss doctor recommended IV steroids “as soon as possible” so, I had a dose this afternoon
- originally, I understood that while they might help me feel better sooner, they don’t change the degree to which I recover nor the outcomes with MS
- however, if I have recurrent Transverse Myelitis, there is anecdotal evidence (per boss neurologist) that it might change outcomes.
- risks of pulse steroids are not so bad as a prolonged course; I’m trying to be a good patient, trust the process, express my goals/values, so I’ll give it a go; if it helps me get back to tolerating exercise sooner, it would be worth it
- getting my IV steroids was fun! the nurses were lovely, the building sunny, the company (other patients) nice to chat with; one of the nurses seemed to take a motherly shine to me, I even got a hug and kiss and her best wishes. That sure made me feel cared for!
- tomorrow, I’m working. I’ll take a brief break from work to pop-over to medical daycare, get my massive dose of IV solumedrol, and finish up the work day. Not ideal, might raise some eyebrows, but I don’t want to leave my colleagues high and dry, and frankly, I really enjoy my work and would rather be doing that than worrying or stewing on the subject of my health. I’ve done enough of that already.
- originally, I understood that while they might help me feel better sooner, they don’t change the degree to which I recover nor the outcomes with MS
- follow up 1 month to see where I’m at
- repeat head MRI to rule out new plaques; apparently MS people get about 4 new plaques a year, so in 6 months from my previous scan, we should see something if it is MS
- repeat cervical-spine MRI to assess the l’hermitte’s; it’s usually related to a c-spine lesion but there was nothing on my original scan (and thoracic lesions can produce this, though less commonly). However, this odd symptom developed almost 2 months after my original symptoms so maybe it represents a new lesion.
- I probably need to be on some fairly serious treatment but I’m not sure when/what, what’s covered by my health plan, etc
- immunosuppressants can be toxic and dangerous; not safe to be pregnant, could stop for a while if I want to have a baby
- pretty big decision; my MS neurologist’s bias is towards aggressive care: “hit it hard, fast, early and quiet down the immune system”, mine is to “less is more” but that includes “right care.” In this case, there’s little evidence so it’s going to be a question of balancing risks and benefits into the unknown
What I learned:
- I should take a lot of vitamin D (4000units/day).
- There is a pill that might help with my migraines as well as with the neurological symptoms that I currently have (nortriptyline) but we will hold off for a bit on that. (I thought they might suggest gabapentin but I would have less confidence in that)
- the weird feeling in my legs (vibrating/jangling/buzzing) is not necessarily a result of activity per se more one of heat intolerance. Apparently whenever the core temperature raises, as with exercise, the nerves that are damaged (MS/TM means the myelin or coating on the nerves has been destroyed by an autoimmune response) have trouble conducting. So, “cool off and resume” is the recommendation. Interesting!
- vaccines might trigger flares/relapses; next elective one is the flu shot in November so at least we have until then to consider it
And that’s as much as I know. I was delighted to see a team who have had encounters with other patients with similar findings. Their experience is the best evidence that exists so far. This makes me glad that I incidentally used to fundraise for the MS Society (after a dear friend was diagnosed). I also laugh now at the fact that I used to use “Dre Moelle Épinière” to fill out BS forms for online subscriptions etc. when I didn’t want to put my real name in the medical-spammer-verse. That is french for (Dr) Spinal Cord.
I must also mention how great the Fellow was. She heard me. She answered my silly little questions that meant a lot to me (like “why do I get this horrible feeling in my legs when I’m active?”. She had happened to have some serious health issues herself, and understood what it was like to be an MD and a patient. I hope that I’ve absorbed even more from today to make me the most compassionate, realistic, and thoughtful partner and expert in care I can be.
Also, I hope I figure out how to take care of myself.
In medicine, as in many things, more is not always better.
Some of what we do, with our best intentions, may be harmful. An unnecessary test or treatment can have a very real impact on a person’s health, and often it’s not for the better. There are also other patients who need a certain service, but may have trouble accessing it because the system is too burdened with overtesting and overtreating others. It’s time to talk more about this.
To that end, over the past few months, I’ve been working on a project about “the right amount” of healthcare. I would love for you to take a look:
Your thoughts and questions are very much invited. I’ve been a little quiet here on DrOttematic as my passions have steered me elsewhere for now, but I’m still keeping afloat.
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.
I 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)