Tag Archives: MS

Epic SciComm Fail, Mummy!

Dear Kids,

I am writing this missive to you, as I sit listening to your innocent games. It’s been a tough few months for our family, after I temporarily lost my sight at the end of last year and we found out sometime later it was due to an active lesion in Mummy’s brain, caused by MS.

I remember seeing the lesion on the CD of images, on that fateful day, as I sat by the Christmas tree. It was so large, I didn’t need a degree in medical imaging to understand that this couldn’t be normal or likely to be explained away as an artefact of the MRI process. As I zoomed in and out of the sliced brain images, I felt a dawning horror, but also a morbid fascination for the incredible technology behind the images.

I remember showing you both the images a few days later, when the initial shock had worn off and only the ‘Wow, that’s cool!’ wonderment remained. The contrast agent spilled out of the lesion like overturned milk, a bright white stain on the left side of my brain. I showed you the images as I wanted to explain what was happening to me, as a science communication exercise. My mantra of ‘you’re never too young to learn some science’ back fired spectacularly when I experienced your reactions to the abstract pictures.

Yes, I was able to now provide empirical evidence, to you, DS7, for my previous claims of being ‘Queen of the Zombies’ (a family meme I developed to ameliorate your fear of the bogey man and the dark) and you seemed mollified. What I wasn’t expecting from you, DD3, was the visceral reaction to the images. I considered you too young to see the images as anything more than abstract. But you reacted immediately with fear and loathing and proclaimed ‘Mummy, I’m scared of your brain! I don’t want a brain!’

Instantly, I knew I had made a science communicator’s biggest mistake, I had woefully misjudged you, my audience. I started damage limitation, by trawling the internet, to find a cutesy cartoon of the brain doing all the important work that keeps our bodies functioning, to show you. You, DD3, could not be pacified and I ended up having to take you to sit on my knee, whilst they infused IV corticosteroids ‘to fix Mummy’s brain’ at the hospital. I asked the poor Neurology Registrar to pick up the communication baton and explain to you that the brain was important. She struggled, as I had, under your uncompromising gaze.

Over the New year’s break, my sight came back, my right pupil returned to its normal size and my ‘Roid rage’ retreated. Many strangers (who I had made friends with, online) visited our home, to offer their support. You both seemed to adjust quickly to the new Mummy. But it breaks my heart to have you, DD3, role play everyday activities with me, that I’m often too exhausted to do now, in real life – like walking to the park and playing on the swings.

You both have now made career decisions based on my condition. You, DS7, have decided that cone shell venom could cure my MS (after watching an episode of Octonauts) – and hence want to be a research scientist, perhaps to work in my friend Charles’s Lab. You, DD3, have eschewed my dedicated grooming to become an Engineer and now want to become a medical Doctor.

How do I feel about you both wanting to have your futures defined by my illness? Non-plussed, to say the very least. Whilst I try to encourage you to question the world around you and cling to your current inherent wonderment, I want you to do that without the spectre of ‘fixing Mummy’s brain’ looming large in your collective consciousness. I want you to find your own path in this life, unfettered by such a filter. I want to have to same infinite world of possibilities that I had, when I was growing up.

My hope for you both? I just hope that as you grow up and away from your dependence on my care, that you also become somewhat complacent about my disease. I want the mundane minutiae of your self-obsessed teenage years, to replace your current worries for me. But I will support whatever decisions you make, as to your respective futures, for as long as my cognitive abilities hold. When you are much older (even though you, DD3, are eyeing off my diamonds already), we will have to discuss my future and my plans for a controlled and dignified death. I hope you will be well down your life paths by that time.

Love Mummy (aka Queen of the Zombies) Xx

(Image from ZomTeez )

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The Holly and the I.V.

As I sit here in the hospital, hooked up to an intravenous infusion…the last of five I have since the Monday before Christmas, I’m reflecting on my sudden change of status from ‘medical researcher’ to ‘patient’ with my dealings with sundry colleagues in my Dept (Med School) and the local collaborative Hospital.

The back story of this ‘sudden event’ in my life was I had a shunt from behind in my car at the end of Nov, just after my trips to the Gold Coast, to be a key note speaker at QUT IHBIinspires student conference, and to Canberra to participate in the AAS SAGE gender equality conference.

I had an instant headache, minor neck soreness…took 2 paracetamol & got over it. Within 30 hours, I had suffered acute demyelination of my optic nerves resulting in homonymous hemianopia (perhaps completely independent of minor head trauma from car accident). So spent my 40th birthday in early Dec semi blind…and not in a good way! After a couple of trips to the Ophthalmologist…who took 9 days to refer me for an MRI…as she didn’t have time to do the Vision field test at the first appt, I then had to wait 8 more days before they stuck me in the MRI tube…by which time my vision had returned 90% so I could drive myself to my scan.

On the day, I made gallows humour jokes with MRI techs about going in the tube for whiplash and coming out with a brain tumour. After they made me go back through with contrast…immediately, bumping their list, I knew something was up…(and was no longer laughing). I went to pay and the notes were marked ‘urgent’ and the admin lady didn’t know the code for what the MRI folk saw. I found out the next day (when I got results at the GPs) it was suspected tumefactive MS…she’d never seen it before, as too rare?

As they had sent me home from my MRI with my CD of 313 images the day before…and I had already seen the large lesion for myself on the on the contrast scans. Had sent the series that looked dodgy, via twitter DM to a mate who is a consultant specialist in Geelong (who offered to have a crack at rudimentary Dx). He called old MS lesion or scarring on the scary looking white patch on the scan. So…I was braced for impact when I got the full annotated MRI result from the GP the next day (Sunday before Christmas)

At 9 am Monday 22nd Dec, I emailed the referral letter directly to my chosen specialist….The head of the Clinical School at work, with whom I sit on several committees. He rang me that arvo, told me to get to the day unit immediately as he had arranged his Registrar to start mainlining a broad spectrum anti inflammatory (corticosteroid) into me as needed 3 days IV…and we had only 3 days left before Christmas. So I spent parts of the next 3 days, fielding shocked looks & urgent questions from my pharmacy & ID colleagues, who run the day unit. (No such thing as medical privacy when you work in a small regional Med School and collaborate with many clinicians at the Hospital!)

I managed to make the Med school end of year staff BBQ, with the IV line hanging out of my arm, to which one jolly japster (who shall remand nameless, to protect reputation) remarked, ‘Well, you’ll be able to mainline gin, now!’ << very tempting!

I didn't really sleep for a week over Xmas/New year….I've definitely had better festive seasons! I've spent a lot of time, talking my 3yo off the ledge, as she freaked out when I showed her the MRI pictures…she was convinced she didn't want a brain, as they appeared to be too much trouble (Epic SciComm fail there, Mummy!) My 7yo son thinks I really am Queen of the Zombies now, as I have empirical evidence for bits missing from my brain. I've also had IV iron x2 and IM B12 but my VitD levels are nearly double the recommended 50 units… 86! My proudest recent achievement…! Due to my love of (unhealthy) levels of sun exposure.

I was excited and humbled by the out pouring of support I received from my friends and followers on Twitter, many who came to support me 'in real life' over my time at home, adjusting to the prospect of having a condition (as yet to be fully diagnosed) that may be progressive, chronic and perhaps in time, send me functionally blind.

At the moment, I'm awaiting further tests: A lumbar puncture to confirm or deny presence of oligoclonal bands in CSF (15th Jan) and further (stronger) MRI (20th Jan) to see if IV & oral steroid (course finished 2nd Jan) has changed the lesion at all..and to check my whole spine for other lesions. These should then enable a step closer to a diagnosis, allowing for more nuanced anti inflammatory treatments, such as humanised monoclonal antibodies, that block the Individual inflammatory mediators (cytokines) or the molecules that T cells use ( alpha 4 integrin) to stop them crossing the blood brain barrier, to launch an cytotoxic autoimmune attack. But my serum also needs to make a trip to Germany, to check for John Cunningham Virus antibodies….and a positive result would rule out the use of the integrin blocker mAb…due to a nastier secondary side effect leading to other major immune defects.

But back to work on Monday, where I have to deliver a new unit for my course, that I was supposed to be writing in Dec/Jan/Feb…but I've lost 3 weeks of work time due to blindness. I'm hoping I can make a case for employing a casual academic to help me out in the next 6 months as I am unsure that I will be able to work at the same level of intensity as before. We shall see….!

(Thanks to @ad_mico for the idea for the title)

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