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MS101 - A Tip Sheet for GPs

1 August 2015

What I’d like to discuss in this post are a few things I wish all doctors out there were aware of. Not so much along the lines of scientific facts, but more in terms of how it feels to face a nebulous diagnosis like MS, or pre-MS (by this I mean the state generally referred to as being “in limbo”, where MS is suspected but not confirmed) and how you can help, not hinder the process.

The theme of this, the first of two instalments, is that of Dealing with Uncertainty. I think one scenario which doctors# may struggle with is when faced with a patient who doesn’t fall into the “easily diagnosable” basket. And I get it. I really do. As a former biomedical researcher, I too see the world through a scientific lens and when faced with symptoms of an unidentified source, instinctively start to formulate hypotheses as to the underlying causes and ways to go about testing them. When answers are not forthcoming, I acknowledge it can be quite confronting, and so, without further ado, here are some important points to remember should you ever find yourself face-to-face with such a challengingly unclassifiable patient:

  1. MS is a highly heterogeneous condition:  While there are some MS diagnosees who present in a ‘textbook’ manner, it appears equally, if not more likely, that they don’t. It’s a similar concept to the notion of women giving birth exactly after 40 weeks of gestation or after 12 hours of labour. Who does that actually happen to, right? Demyelination can affect people in so very many ways, so you would do well to refrain from relying too heavily on so-called rules regarding presentations. Bear in mind one of the most difficult aspects of the disease is that so many people with it look completely normal. This may well throw you for a loop because you are likely used to triaging patients in direct proportion to how sick they look. So please don’t be lulled into a false sense of indifference. Conversely, don’t catastrophize either. Best to put away that crystal ball and completely refrain from commenting on disease severity or progression. Furthermore, I’d go as far to say give up on frantically trying to recall what you rote-learned in Neurology class decades ago, or googling demyelination, because it’s unlikely to be of much practical use at all. One of the reasons for this is…  

Question mark

  1. Science doesn’t have all the answers: I think this is particularly true for neurology. You only have to peruse the conference topics on offer to quickly determine that the word “controversy” comes up over and over again. There's simply an inherent lack of knowledge/consensus regarding the scientific workings of the central and peripheral nervous system. If you, as a doctor, rely too heavily on things being black and white, you are just going to have to get comfortable with the fifty shades of grey concept i.e. patients who end up with an MS diagnosis may be “in limbo” for quite some time. The whole “diagnosis of exclusion” throws a spanner in the works too, because there’s a vast array of differential diagnoses to explore and if those investigations don’t uncover anything definitive, it means you wait… and wait… and then wait some more until something new happens. Even if feel you have exhausted all avenues and are at your wits end as to how to proceed next, do be mindful that your patient will likely be much more frustrated and distressed than you are. While it is understandable that you may be dissatisfied and perplexed at failing to receive a clear diagnosis from the small army of different specialists you have dutifully referred your patient on to, this is really no excuse for uttering insensitive statements along the lines of “There’s clearly nothing wrong with you – you must simply want to have MS”. Launching such attacks on the personal integrity of your patient should be avoided at all costs because it will likely:
    1. Have enduring effects on their psyche
    2. Inflict irreparable damage to your doctor-patient relationship
    3. Make you appear unresponsive and/or heartless should further events prove you wrong## which leads me to my next point...
  2. It is OK to say “I don’t know”: Really I mean it. You might feel uncomfortable with this concept at first, given all those years you spent in higher education, but trust me on this: MS/pre-MS patients will appreciate your honesty here rather than condemn you for being unknowledgeable. If you have gone as far as to make a preliminary misdiagnosis that is subsequently ruled out by a specialist, best to simply admit to the oopsies, apologise and move on. Don’t fret, it’s been done before. No biggie. But I do caution you to heed the following piece of advice. It is not prudent to claim you know more than the specialist and insisting on subjecting your MS/pre-MS patient to brutal pseudo-psych evaluations, especially mid-relapse while they are at their lowest ebb. It will make matters much much worse if you write off all apparently unexplained symptoms as psychosomatic as hindsight may well prove you wrong. A much more preferable technique is that of openly and honestly acknowledging your limitations e.g. “I’ve never had a patient with demyelinating lesions before on my books before – tell me about how it affects you and how I can help?” which paves the way for working together collaboratively to iterate towards novel solutions. Speaking of which….

  3. It is also OK to ask questions, but please make sure they are relevant: While it may be unnerving to be in unfamiliar territory, especially if you’ve never breathed the same air as someone with MS/pre-MS, don’t stress. Such patients are usually pretty forgiving on this front, and are much keener to locate a doctor who is willing to learn, rather than one who claims to know everything, so my general advice is to knock yourself out on the question front. Just stay on topic please, and a certain amount of sensitivity is appreciated because sometimes patients may not want to talk much either. Simply forget making an agenda or a checklist of questions, take your cues from them and go with the flow of the conversation. While it is generally acceptable to tactfully inquire as to how they are doing in the mental health arena, under no circumstances is it recommended that you head off on unwarranted and inappropriate tangents into DSM-5 fantasyland. Should you be in any doubt here, questions along the lines of “Would you rather have MS or be bipolar?” will generally not be well-received. Furthermore…
  4. It is not OK to judge how a person reacts to the news that they (may) have MS: You would think this is a no-brainer but I am going to risk stating the obvious here. Verbally reproaching your MS/pre-MS patient for being “too blasé” is unlikely to win you a nomination for Most Compassionate GP. Patients will likely to be fairly stunned if it’s the first time they have come across the term demyelination and/or brain lesion, and an apparently emotionless response might well be masking a state of considerable inner turmoil. Digesting the diagnosis of MS is one that takes a fair bit of time (months later, I’m still in the thick of it), and name-calling simply doesn’t help matters.

Stay tuned for the next instalment...

# Please let me say at this point how much I respect doctors. I have many friends who are medical professionals and I have watched them all work very hard to get to the point where they are qualified to practice. Furthermore, I acknowledge they expend tremendous time and effort maintaining their knowledge through ongoing professional development. Finally, I commend them for being drawn to a profession where they share their hard-earned knowledge with the goal of helping people who are unwell.

So I hope any doctors reading this understand that I intend no disrespect here. I’m simply offering my perspective of someone who was needlessly subjected to unpleasant interrogations by various individuals within the medical profession who could stand to increase their awareness of and insight into both MS, and pre-MS. You’ll quickly realise the advice is half-jest half-genuine. I’m targeting this at GPs only because they are on the front line, so to speak, when it comes to dealing with your average MS/pre-MS patient, and yet they may not encounter many in their career. That being said, I think there’s a message in there for everyone, medically inclined or not.

## Remember, just because a clear diagnosis fails to be reached doesn’t mean there isn’t some underlying medical condition wreaking havoc. Let this also serve as a gentle reminder that MS/pre-MS patients have absolutely no control over the integrity of their blood-brain barrier and gadolinium-enhancing lesions are not normal findings on an MRI. So if you do happen to have any fleeting thoughts that your patient keeps returning because she actually enjoys being the object of such intense medical scrutiny, it is of vital importance you suppress the urge to verbalise them.

Image Credit: 

Banner and teaser image: https://www.flickr.com/photos/debord/4932655275 (Véronique Debord-Lazaro)

Question mark image: https://www.flickr.com/photos/colinkinner/2200500024 (Colin Kinner)

 

Comments (59)

Great post. And it is so true... I find doctors, especially neurologists, to be very well meaning. But if they don't have the answer - and lets face it, even with a confirmed diagnosis of MS they don't always have an answer for me - it doesn't help if they pretend they do. A doctor who listens and learns about my specific case of MS is a rare and valuable thing. I think there is also a responsibility on MS patients too. While we may not be in a great place during a relapse, we can help our doctors by being prepared - lists of symptoms we experience (including frequency and intensity) made when we aren;t relapsing can help, as can information on anything else that is happening in our lives and to our health.

Thanks Lady with MS! I totally agree about the patient responsibility part too, which is why follow-up post will be on "Managing Expectations". I am very much enjoying keeping up with your personal blog. It's inspirational to see how far your advocacy efforts have gone - thanks for your dedication in this arena!

Hi Sarah, This is a great post and has helped me understand the difficulty of a MS diagnosis. We were very cranky with the Australian Government last year when they introduced a mandatory medical assessment for people under 35 with MS so they could get the Disability Support Pension. I'm wondering how these people are feeling when dealing with government doctors and medical officials and having to re-explain their diagnosis and symptoms over and over?

Thanks for the feedback Andrew! My initial response is to say that while no-one likes to have to attend more medical appointments than absolutely necessary, I think the manner in which the appointments are conducted and the demeanour of the medical practitioner matters more. That being said, as a newbie diagnosee, I defer to my much more experienced bloggers and readers here. Perhaps they feel more strongly about jumping through more hoops (particularly if just getting to these appointments is problematic - The Unaffected One might be able to weigh in more on this!).

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