DMT tool vs. The Flawed Milky Way

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Urbanisation is by and large a good thing, and I wouldn’t want to miss the buzzing environment of people, culture and, last but not least, cuisine for a second. However, it comes with an annoying side effect: more dangerous city streets. Last week, I had to experience this the hard way. Decennia of intelligent road design couldn’t protect me from being hit by a car while going out for a run. How did this happen? The answer is simple: There were flaws in the layers of defense that normally lie between hazards and accidents as a pedestrian. And if not stars but flaws are aligned in each layer, accidents can occur. Let’s have a look at my flawed milky way: 

  1. It was 6:45 AM and dark. 
  2. I crossed the street at a bike and not at an official zebra crossing. These crossings are less clearly marked on the road. 
  3. There was a traffic jam on the first lane of the two-lane road, and cars stood still just before the bike crossing.
  4. There was a big truck queuing just before the bike crossing which obliterated the view of the second lane I had to cross.
  5. There was busy traffic on the second lane.

Because of reasons 1 to 5, I got hit the second I passed the truck and looked to the right. A similar set of inconvenient serendipities determines whether you will finally develop MS. A combination of genetic susceptibility, environmental risk factors such as smoking or childhood obesity, infectious agents such as Epstein Bar Virus and immunological factors rendering your B and T cells more active are protagonists in the ideal autoimmune crash. And when it happens, you are bound to ask the wrong questions…

Source: https://www.schreibermd.com/fracture-olecranon

During the accident, my elbow, and more specifically the most proximal part named the olecranon, got crushed. Fortunately, I was operated the day after the accident by two very crafty surgeons who managed to puzzle the bone fragments together leaving me with a surprisingly functional arm (and a lot of extra metal). However, when I got the news my elbow was fractured and needed to be operated, being a doctor did not impede me from asking a completely wrong set of questions:

  1. When will I be able to cycle again? 
  2. When will I be able to run again? 
  3. When will I be able to swim again? 

Although I shifted focus over the years, my remaining anatomy knowledge should have alerted me there were far bigger threats than not being able to cycle for 6 weeks. The olecranon is namely part of the elbow joint, covered with cartilage, and crucial for flexion and extension of the arm. There is a considerable risk of permanent arthrosis (read: pain), and joint stiffening. The questions should therefore not have been about when I would be able to cycle again but how. 

A similar thing happens in MS when individuals have to decide on disease-modifying therapies (DMT). A decision about therapy often coincides with a clinical relapse or new inflammatory lesions on MRI. This leaves people overwhelmed by emotions but also unleashes a primal drive for relapse amnesia, and getting back to normal as soon as possible. This is exactly why we have designed the ‘DMT tool’ which is now integrated on the clinicspeak.com website: to enable pwMS who have to switch treatment to ask the right questions under difficult circumstances. Hence, please don’t hesitate when you, one of your relatives or acquaintances are faced with treatment decisions to have a look at our tool, and discuss the results with your consultant. 

Twitter: @SmetsIde

Disclaimer: Please note that the opinions expressed here are those of dr. Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.

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Ide Smets

15 comments

  • Impressive how you got straight back to the blog. I hope you’re able to resume the activities that matter to you soon, maybe running in a park, floating and sitting on an exercise bike without using those moving handles, first. You have your own decision tree to make! Meanwhile keep making progress and thanks for the analogy and the DMT Decision Tree reminder.

  • Ide,

    I hope you make a speedy recovery.

    “being a doctor did not impede me from asking a completely wrong set of questions:

    When will I be able to cycle again?
    When will I be able to run again?
    When will I be able to swim again?”

    These are exactly the right questions too ask. These are the questions I asked my self (with others) when I was diagnosed. These activities are about freedom, health, independence and choice. 18 years on I still cycle most days, but gave up running (couldn’t run) after a major relapse 2 years after my diagnosis.

    You and Prof G have got a hint of what it’s like for an MSer – the fear of loosing the things that are precious to you. Fortunately, you have also experienced the joy of being treated by doctors who get their patients better. If only neurologists could offer their patients such hope!

    You’ll br nearly back to normal by Christmas.

    • Maybe this were the right questions, but I was definitely skipping some rehab stages. And indeed, we definitely lack some bolts and hammers in neurology.

  • Oddly enough I have a similar injury due to tackling a speed-bump at a tangent, which revealed some poor MS related visual attention and slow executive functioning. Factor 6 though is a highly dangerous urban environment saturated with climate destroying vehicles which have become the norm even though they have ruined our cities as living spaces and are destroying the future.
    Pedestrians, that is normal urban people, should not feel guilt for being hit by a vehicle.

    • You are hitting the nail on the head there. I could not agree more, especially if you see the casualty rates because of car accidents in big cities. Another kind of pandemic that needs action.

  • It’s a pleasant surprise to have you back providing valuable posts so soon, Ide.
    It is good of you to use your accident to inform the knowledge and considerations of PwMS in regards to DMTs.

    I think the comparison tool would benefit from being expanded to cover the DMT options when you have failed on a previous one or there is another valid reason for change.

    Please focus as much of you energies as possible on self care and elbow rehabilitation.

  • Not an MS point:
    It was not your fault.
    You were on foot.
    Therefore you had right of way.
    Whether or not you are on a major crossing or a bike crossing or whatever.

    The onus is on drivers to drive with sufficient caution that they have time and space to react to pedestrians appearing out of nowhere.

    That is their responsibility as a driver.

    Always.

    So don’t blame yourself, even unconsciously.

    • Simon you are absolutely right and the UK Highway code is changing to make that 100% clear. Too often people drive like they own the road. Not true, the onus is on the one doing the most harm (vehicle driver) to give way to those who will be harmed the most.

      Ide thanks for your post and best wishes for a full and speedy recovery xx

  • Hi Ide, great to hear you are doing well and hopefully you will be back on your bike and running soon!

    I love the decisions support tool and it really focuses on whats important to us. If you are thinking of expanding the tool I think it would be useful to focus on side effects and how they can be managed. The MSTrust decisions tool where many newly diagnosed patients are directed lists the serious side effects but doesn’t put them in context. Looking at online forums there is a lot of discussion around treatment with people concerned about starting the more effective drugs due to the side effects.

    Thanks for all the tools in Clinicspeak!

    • Having just changed my DMT (started yesterday) due to a relapse earlier this year, several of your points really hit a nerve with me, no pun intended, inparticular the primal need for relapse amnesia – so true!
      I used the DMT Tool at length in all kinds of combinations to get to a decision and was grateful it was available.
      Thank you for continuing to blog despite your injuries. Wishing you a complete recovery soon.

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