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)
Partly as an extension of my work with the Canadian Medical Association’s Healthcare Transformation Working Group, I was invited to give a brief presentation on The Unique Value Proposition of Physicians at an eduction session that was part of the CMA’s General Council.
It’s probably shameful to admit it, but I need to say it: I am still a relative new-comer to the world of medical leadership and policy, so it was a complete honor that I was invited to speak, if briefly, about a controversial topic in front of a room full of very engaged physicians, healthcare advocates, and policy makers.
To have my input valued to the point where a room full of brilliant people sat and listened to me, it’s a dream. It felt incredible as I looked out and saw people in the crowd nodding their heads in agreement, or when they came up to me afterwards or the next day and passionately agreed or disagreed or were bursting with their own perspective. In hallways and elevators, with wine or coffee in hand, everything from “that was fantastic, yes, patient care comes first” to “you young people, you’re what’s ruining our profession and making doctors inaccessible to patients with your work-hour restrictions and ‘work life balance’ ” was passed by my ears. I certainly didn’t have a snappy response for everything – the unique role and value of a physician can be quite nebulous – but we all agreed that we, as a group, need to work better at defining what we do now and what we want to do in future.
Being around smart people who really care about the future of medicine is such a reassuring thing. There are many people in our daily lives who are dispassionate. Who don’t seem interested in what’s happening around them or in affecting change. But at this event, there are hundreds of physicians (and some affiliates) who are – for lack of better description – “fired up.”
There were some extremely controversial subjects up for discussion including end-of-life care, scope of practice, physician wellness, and so on. I’m quite sad to be missing the Appropriateness and Accountability session as it has been emerging for the last few years as a real area of interest for me, however, I will be able to watch it online. I think I’ll be waving my arms at the screen and saying “yes! exactly! I know!” a lot.
One huge bonus of the GC was meeting and reuniting with some pretty interesting people, some of whom certainly had a hand in where I am today. One of my first PBL tutours, a leadership guru with an incredible memory, a blogger that I’ve followed off-and-on for years, some fellow young docs who are leading their peers in tricky times, an intensivist who tells it like it is, a rural doc who has all the characteristics that an awesome rural doc should, a big city innovator with rural roots, and the list goes on!
I hope that other early-career physicians like me will find that the CMA does have a lot to offer. Even if you don’t agree with what the CMA is doing on an issue, you should still get involved. In fact, that’s a great reason to join the CMA. We have the privilege of being a self-regulating profession and every view point needs to be included in that. It still floors me to think that the future of healthcare in Canada can really be shaped by physician voices, including mine.
There are some well-known reasons to date a doctor and some oft-repeated warnings about the process. There have been a few things that I would say my mate never expected. Maybe there are some perks but there are also plenty of quirks. Be warned! Any mystique the MD once had will definitely fade with this post.
You know you’ve got the hang of dating a doctor if it doesn’t phase you when:
- you wake up next to your significant other who is holding a measuring tape around her calves and has the Well’s criteria for DVT Calculator open on her iPhone. “What? I might have a DVT! Well I probably don’t, but I’m on that birth control pill which has an increased rate of DVT, I’ve had calf-pain for 3 days, and I just don’t want to be one of those fools who doesn’t go to the doctor until they are dead.”
- your counterpart sizes up any lump or boil that you have, offering to incise and drain it or to cut it out of you, and is frankly a little let down when you won’t invite them to do so
- there are several drawers in the bathroom that if you open too quickly, various medications and medical implements (ciprofloxacin, metoclopromide, sutures, gloves, etc.) fall out. “Well, you never know when you might need them,” she says, and you are starting to agree.
- she learns that your work has benefits like a dental plan, she seems a little too excited about the prospects of sharing yours and expresses how excited she is to be able to see her dentist who she misses dearly [No, doctors don't get any extended health benefits, including no drug coverage, dental care, etc. and most of us think it's ridiculous or are cheap so we can't wait to be on your benefit plan ;) ]
- with friends, your doctor partner cannot resist talking about work, and it usually degrades to gore stories about messy deliveries (the taste of amniotic fluid), breaking ribs during CPR, or that one time the guy’s abscess burst all over her shoes – and you can listen to any conversation, even while eating raw sea creatures for dinner
- she has to ask for your guidance or expertise in order to know how to spend unplanned time off; “how do you… like… what will we DO with that time? Maybe I should just take more shifts?”
- it’s hard to have a meal out without her commenting on the artery-hardening or diabetes-producing qualities of the food, yet she eats every last bite of it; you are beginning to question why there is EDTA in your salad dressing [since we are being honest, my fellow calls it "ESPN" with a laugh]
- after first meeting your new doctor girlfriend, within a day, your dad asks for her to apply her surgical skills and remove a sliver from his foot; your mom is embarrassed, your doctor girlfriend is delighted, and dad hands her the paint thinner (“sterilizing solution”), a blunt needle, and puts his foot up on a chair
Doctors, what has your partner put up with? Partners, got any hard-to-come-to-terms-with ‘gems’ to tell about being with a doctor?
The first and only rule is that doctors should never date their patients. Ever. But some do it and live happily ever after. Others do and wind up getting their licence taken away by their provincial college. And all the doctor colleagues get a quarterly newsletter which spells out your bad deeds in a bit too much detail as well as listing your penance and penalties! Doctors are in a position of authority, they are privileged with your secrets, and the dynamic of the doctor-patient relationship cannot transform into a safe, equal, or legitimate romance.
I suppose at times it could be flattering to be complimented in the workplace, but as a doctor, it is almost always awkward to be on the receiving end of this exchange. And frankly, it would be highly unprofessional to be sharing compliments with patients other than “you are managing your diabetes very well,” “I knew you could quit smoking, waytta go!” or (maybe) “I like your shoes!”
Being a female doctor, yes, young men will hit on you when feeling bold. An old favourite was a guy with concussion. When I asked him “are you seeing double?” he looked puzzled… “well, can you see two of me, for example?” I asked
Ahhhh well dang I only see one of you and you are looking mighty fine!
It’s hard not to smile and yet it’s not really welcomed since we have to react professionally and continue to provide the best care we can. Patients why are psychotic or high or have a dementia that makes them hypersexual can be easily dismissed or reoriented. Other patients just don’t realize they are crossing a line and they don’t realize it could affect the doctor’s ability to provide their best care. Dirty old men will try to flirt and they do it awkwardly, trying to touch your ass as you ask them to step on the scale or saying:
Now how old are you? You are the prettiest nurse, I mean, prettiest doctor I’ve ever seen!
Sigh! It isn’t necessarily flirting but when questions get too personal, it can quickly turn the conversation into an uncomfortable one. An example from today:
What about you, you gonna have any puppies up in there? . . .
(trying to be polite, I try to make it into a joke and explain that we can’t even get a cat since my boyfriend is often away as a pilot, and I travel too much for work, so yeah, no kids right now …)
Well I guess you have to sleep together for that eh!?
Not that long ago, I was sending a patient to see a specialist. We were going over the plan and he commented on my lack of jewelry. Then he suggested I marry his son! When I explained that I had a boyfriend of two years, he suggested that if my boyfriend wasn’t up to snuff (“if he’s an asshole”), then his son would be a great catch! His son was standing right beside us. It was all a good joke except how do you excuse yourself from the room and focus diligently on the paperwork needed for the patient’s care after that!?
Suffice it to say, if you are a patient, don’t flirt with your doctor and don’t ask them out and PLEASE don’t propose, even in jest. I would not do that to you at your place of work, particularly if I expect you to help me with a serious or personal problem; the fact that we are bound by an oath to not harm you may be the only thing that makes us bite our tongues, make a joke, and try to move on before we punch you right in your hematoma.
If you are a doctor, you’ll best be finding your mate away from the workplace. It is great to be with someone outside of healthcare; we give each other unique perspective on our work and our jobs are different enough that I usually learn something new at the dinner table. Plus… the dental benefits! There is a lot of strange stuff that you just have to roll with if you do find yourself dating a physician. See my next post – what it’s really like.
The Residential Schools Commission recently visited Iqaluit and according to CBC North, provincial and territorial education ministers have resolved to include the history of residential schools in the curriculum.
When I hear about residential schools, I think about an abuse of trust, children and parents being torn apart, and those children subjected to strict rule and, in many cases, verbal, physical, and sexual abuse. I think about them being forced to receive Caucasian names even different last names than their siblings. I think about them being forced to believe in one God and to follow European religious doctrine. They were made to live in unfamiliar situations with harsh discipline and limited links to their home community and supports.
What I find interesting is that the problem for some aboriginals is that it is not necessarily that horrible things happened to them while in school, but that they were deprived of the experiences they would otherwise have had. During those formative years, they were unable to witness and learn about their own culture. The negative legacy – language not spoken, traditional spirituality not practiced, and survival on the land too challenging – is pervasive.
I had a patient recently who wanted to seek some alternative remedies for an ailment. He told me about an old friend who mentioned that a concoction using various tundra plants could be applied to relieve pain. My patient lamented that he lacked the knowledge to make the poultice himself because when he was a child and would have learned to do this, he was instead attending a residential school.
I am not a naturopath but admit some fascination with the possibility that not all medicines need come from a lab. I wonder what evidence and knowledge we might have today if some of those young residential school kids had not been traumatized by the events surrounding their education and had instead been given a path to mix their traditional culture with a fascination in western science?
The tender spring shoots are nutritious, and can be eaten when they are boiled. The inner bark (cambium layer) of the tamarack tree can also be scraped, dried and ground into a meal to be mixed with other flours which some references indicate is an acquired taste (Peterson 1977), while other references imply the gummy sap that seeps from the tree has a very good flavor when chewed (Hutchens 1973), as sweet as maple sugar.
A tea made from tamarack bark is used as a laxative, tonic, a diuretic for jaundice, rheumatism, and skin ailments. It is gargled for sore throats. Poultices from the inner bark are used on sores, swellings and burns, as well as for headaches. For headaches, Ojibwe crush the leaves and bark and either applied as a poultice, or placed on hot stones and the fumes inhaled (Erichsen-Brown 1979).
The Chippewa (or Ojibway/Ojibwe) word for tamarack is muckigwatigí meaning swamp tree. The bark of the tree is used for burns. For burns, the inner bark of tamarack is finely chopped and applied to the burn in the morning and partially washed off at night, then reapplied the next morning. The medical constituents of tamarack are a volatile oil which contains pinene, larixine, and the ester bornylacetate (Densmore 1974).
The Potawatomi and Menomini make a heat-generating poultice from fresh inner tamarack bark for inflamation and wounds, or steeped for a medicinal tea. They also use it as a medicine for their horses, either as a tea to help Menomini horses with distemper, or shreaded inner bark mixed with oats to keep the hides of the Potawatomi horses loose (Erichsen-Brown 1979).
The Cree have made traditional use of the tamarack, called wachinakiní or wageenakiní, for millenia.” – Native Plants