Test Results...

For you wonderful folks who follow this blog, I'm sorry to have left you hanging on the outcome of my last doctor's appointment. The results are in and....

-drum roll-

*MRI was negative for demyelination = not MS.

I know I should be over the moon that I don't have MS, (and believe me, I really am happy not to have it), but that leaves me with No Diagnosis.

Or worse, the non-diagnosis of Fibromylagia - (which apparently means I am a bat-shit crazy with a personality disorder)

I couldn't write about this for a few days, because I mostly feel defeated. I feel ashamed of being sick with no objective indication of illness. I feel dismissed.

I don't know where to turn next. Do I just give up? Is this the way life is going to be forever?

Thanks to God for my wonderful husband (who loves me no matter how I wake up feeling each day), for my friends (who stick by me even when I cancel plans with great frequency), and for my mom (who checks in on me everyday hoping for good news...and buys me groceries when I am too ill to leave the house). I don't know how I would have survived the past few years without you all to count on.

* Actually, the reason the doctor didn't want to share the report in advance of our meeting was due to what she calls an 'incidental finding' of my cerebellar tonsils (WTF??) being 4mm longer than they should be. Apparently this is not something I should worry about. Who knew there were tonsils in the brain?

Dr. Who? Titles and Power in the Patient-Physician Relationship

I was raised to address people by their last names until invited to call them by their first names. In university, I always called my instructors "Professor" or "Doctor" unless invited to do otherwise.

In written correspondence, I refer to a person as Mr./Ms. /Mrs./Dr. (unless or until they sign their message with their first name, in which case I understand this to be an invitation to refer to them as such).

But I hate, hate, hate when physicians address me by my first name and introduce themselves as "Doctor". Immediately I bristle, knowing that they are setting up a power dynamic where they are privileging their role over mine. I know you're are a physician...I'm here to consult with you, if you told me your name, I would still be quite clear about the purpose of this encounter.

One of my favourite med-bloggers, Dr. Jessica Otte tackled this thorny issue a few months ago in a post "What's in a name? Doctors, titles and pretence" she tells readers that with patient introductions, she says: “Hi, I’m Dr. Otte but you can call me Jessica if you like." I would love it if my physician were to introduce herself to me this way. It makes her role clear, but is also attentive to the patient's comfort. It is unpretentious and sets a tone of shared power.

Whether it be respect, authority, closeness, familiarity or hierarchy, how one uses first names, last names and titles sets the tone of a relationship.

Dr. Jennifer Middleton, author of the blog The Singing Pen of Doctor Jen, took this topic up recently in a post "What ever happened to Doctor?"

Unlike most other businesses and professions, we physicians have a sacred contract with our patients. They allow us into the most private and intimate details of their lives. In return, we pledge to maintain stringent professional boundaries related to our behavior and give them the best of our intellect and compassion. Being addressed as "Doctor" is a constant reminder to me - and to everyone I interact with - of the oath I took to fulfill that pledge.

Please hold me accountable, and keep calling me "Doctor."

I think I understand where Dr. Middleton is coming from here, but I'm not sure I agree that a title is necessary to establish clear boundaries in a professional relationship. For example, my husband is lawyer and law professor; certainly his profession obliges him to maintain confidentiality and to be privy to intimate details of his client's lives. He holds two undergraduate degrees, three masters degrees and a doctorate and yet, he never uses an honorific with his clients. Despite being on a first-name basis, I don't for a moment think that the boundaries of his client relationships are unclear.

Similarly, my priest always introduces himself by his first name. He doesn't mind if people prefer to call him "Father", but in no way do I think that his sacred contract and requirement for confidentiality is diminished by forgoing the use of a title.

Dr. Synonymous responded on his blog to Dr. Middleton's post, saying: In the late 70's, we also had resident physicians who didn't want to be called "Doctor". It seemed that the "denial" of doctor "status" was one way to "power down" and not be threatening or aloof from patient "status".

Dr. Synonymous (also known as Dr. A Patrick Jonas) goes on to quote The Healer's Power, by Howard Brody, MD, PhD (1992): "To be compassionate in response to the suffering of the patient is therefore one of the most powerful things a physician can do: but this is possible only to the extent that the physician is willing to adopt a position of relative powerlessness, to acknowledge that the patient's suffering has incredible power over him and that he cannot remain unchanged in the face of it. This is a major irony of the physician-patient relationship, in which a sense both of one's own healing power and of one's necessary humility forms a synthesis of the apparent contradiction of power and powerlessness."

Dr. Jonas summarizes the meaning he takes from this quote, writing, "Some physicians may not feel ready for this type of struggle for professional development and don't want to fully accept the title of Doctor."

With all due respect to Dr. Jonas, I don't agree with this conclusion. While this may be true for some physicians, I think that the opposite could be true. Perhaps being on a first-name basis with patients can also be construed as a marker in professional development. It could demonstrate a sense of coming into one's self as a professional, whereby the physician trusts enough in their knowledge so as not to require the deference of a title in order to feel comfortable in their role.

The New York Times discussed this issue in 2009, Exam Room Rules: What's in a name? . Anne Marie Valinoti, MD struggles with this in her practice, but also raises an interesting issue of the use of titles between colleagues: "This got me thinking of how, in my own career, I have always been addressed as “Dr. Valinoti.” Freshly minted M.D.’s, some as young as 25, get a title of respect while seasoned nurses in the hospital are Betty, Kaye or Nancy.

I remembered the absurdity of this situation when, as an intern, I was addressing critical care nurses with decades of experience by their first names while they deferentially called me “Doctor.” These were women who had started their careers when I was still playing with Barbie dolls, yet where were their professional titles? Like most things in medical training, I got used to it, and it became second nature."

The comments to this article were fascinating. Some doctors insisting that they worked hard and deserved a title, to some not caring whatsoever. Patient comments were similarly diverse, some most comfortable with more formal introductions and others preferring first names.

One theme that stood out for me is that patients seem to prefer that their physicians use the same tone of formality (Mr./Ms./Mrs./Dr.) with their names as the physician uses with their own. Symmetry seems to be the key feature when it comes to introductions.

One last comment, I noticed (perhaps because I am on the path towards a PhD myself) that there was a certain tone of animosity in the NYT comments section from physicians who resent using titles for non-MD colleagues who also have access to the title 'doctor' (doctorate-level nurses, chiropractors, naturopaths, research PhDs).

Clearly this is a divisive topic. I'm curious how much time and discussion attention to power dynamics actually receives in medical education. Please feel free to weigh in your thoughts on titles...

In the meantime, you may call me Penelope.

Results Day

I am meeting with my specialist this afternoon to learn the results of the MRI and I am nervous.

At this point, I don't know which scares me more: actually getting a diagnosis or no diagnosis at all?

This will be my third specialist opinion. When I first met this physician, she asked me if all the tests came back negative, would I accept that there is "no diagnosis"? Or accept a diagnosis of "fibromyalgia"?

Not a chance.

I've read too many accounts of missed diagnosis to give up.

In fact, the first specialist I consulted missed my diagnosis of hypothyroidism. If I had taken her word that there was nothing wrong with me, I wouldn't be in school today.

Then again, it could be MS.

Either way, I wish it wish I knew in advance what to expect.

My Gluten-Free Adventure

I have a love affair with gluten products: toasty bagels, tasty crumpets, little bundles of mini-wheats are part of what gets me out of bed in the morning.

That's why I cringed when my Internal Medicine Specialist suggested that I try a gluten-free diet. While my blood tests did not indicate Celiac, my physician told me that many of her patients improve on a gluten-free diet, even if their blood tests are negative for the antibodies.

After fighting the idea of a diet overhaul over Christmas (who wants to miss out on cookies! pies! christmas pudding!), I decided last week that it was time to take the suggestion seriously.

I started off at the grocery store. We are fortunate to have a large store nearby that carries a large line of gluten-free products. Along with a mountain of fruits and vegetables, I bought "replacements" for all of the carbs I might miss:

- gluten free bagels

- gluten free crumpets

- gluten free bread

- gluten free pizza

- gluten free brownie mix

- gluten free frozen entrees

There! That wasn't too hard. Until I hit the checkout. My usual mid-week shop for fruit and bread comes to around $50, this week, my bill was $135!

But I'm determined, so I marched my groceries home and prepared to implement my new plan. I was about to put my $6.00 gluten free bread in the toaster when I came across a website telling me that I would risk contamination if I didn't get a toaster of my own. Okayyy, that's a little much, but I'm game. I dutifully wrapped my bread in tin foil and put it in the toaster oven, hoping that no gluten molecules would find their way into my foil packet of rice-flour goodness.

Next was the peanut butter issue. Apparently the gluten-free person cannot share a jar of PB with a gluten-eater in the house either. Alrighty then, good thing there is an extra jar in the cupboard!

My first bowl of gluten free cereal had the distinct aftertaste of sushi - not my idea of the "honey" flavour promised on the package. This might take a while to get used to...maybe after a while I'll forget how good my morning mini-wheats used to taste.

I am now five days into this diet today and - kind of - starting to get into the groove. Now I'm looking for more affordable ways to eat. This means that I am going to have to learn how to cook. My mother will be so proud.

I'm also amazed by how many products contain gluten. Makeup, juice, sauces, yogurt; you name it and it likely has gluten in it. There are whole websites devoted to naming the offending products.

Time will tell if this massive life change will improve my health; but hey, nothing else has worked so far, so - other than bread, cereal, and most everything else that I like to eat - what have I got to lose?

Medical Paternalism - A Rant

Last week I had an MRI as part of a work-up to rule out MS. Today I emailed my physician's office to request a copy of the MRI report in advance of my next appointment. (Having my information in advance helps to prepare me for the tone of the appointment and allows me to formulate my questions in advance. In other words, it is very important to me.)

"I'm sorry, but I will have to ask the doctor for permission to send this information to you and she won't be back until Tuesday. Thanks!"

This shouldn't come as a huge surprise, this is from the same office that declined to tell me my blood pressure, because it might confuse me.

You need permission to send me a copy? Why? This is MY information. This is an image of MY head. The results are about ME. What gives you the audacity to think its ok that you and your staff can see the results of my test and withhold it from me?

Perhaps there is concern that I will not understand the results? I am reasonably sure that if I were an MD, an MD's spouse, or even a medical student, this would not be happening. I am frustrated that one needs to be a part of the 'members only club' of physicians to be allowed access in advance of my appointment.

No, I don't want to be patient and wait. In fact, I don't want to be yours or anyone's "patient". I want to be your "client", and you, my service provider. And when I ask for my medical record, I don't want to ask for your permission.

Stop withholding information from me. Your actions are paternalistic and offensive.

Rant over.

My Mom: Treat as TIA

I wrote a few weeks ago that my mother experienced a stroke-like event that may have been a TIA or a migraine.

Despite completing a "bubble test" (to listen for a hole in her heart), and wearing a Holter monitor (to rule out fibrillation), neither test showed a clear diagnosis. We were surprised when the stroke specialist felt strongly that she had experienced TIAs, and not migraines (as was previously diagnosed).

Due to the serious nature of TIAs, my mother's physicians are choosing to treat her with blood thinning drugs to prevent clotting. (Both my mother and I have Factor V Leiden, a blood clotting disorder).

My poor mom, she is used to having great health. Blood tests every other day are on the menu for the next few weeks. It is a frightening diagnosis, but I am grateful that she is being treated with an abundance of caution.

Where's my IgM?

Back from holidays - what a glorious trip! I snorkelled with stingrays and spent as much time as possible outside in the shade enjoying the pool. What a difference a little health makes!

I returned home to some interesting blood lab results. My ANA is still 1:640, but my ENA is negative, ESR is negative and anti-dsDNA is negative. That's a whole lot of negativity!

But there was also something else missing...apparently my Immunoglobin M (IgM) is on the 'low side'. I'm not as up to date on immunology as I would like to be, but I think that means that something is up.

Oddly, my CK was elevated, which is weird because I hadn't been exercising before my test or doing anything else that should have affected the results.

Also, my MCH is high (which has been consistent for the past few years). My B12 and Folic Acid are ideal and I consume next-to-no alcohol, so that doesn't make a whole lot of sense either.

I really need to go to med school - if only to make sense of my own lab work!