Visualising the future of a patient’s MS is getting easier by the day

The concept of ‘was that my last good day’ is a permanent spectre in my life. I no longer get as rattled by the unpredictability in quite the way that I used to, but it never really goes away. For example: I had an amazing weekend just gone. I Walked 29km over two days, went to a pub for the first time since lockdown, baked some fresh bread, saw friends etc. And now, Monday morning, I wake feeling a bit weird and a bit off. Hard to explain but my mood is one of inexplicable hopelessness, I feel shattered already and am generally quite sub-par. Go figure.

One of the stranger things about having MS is that you just have to accept is the complete unpredictability of it all. Hot/cold, happy/sad, pain/no pain. see/double vision, you get the idea. If you don’t I reckon you’ll go stark staring mad in a matter of months. But back to the present wobble…

All of a sudden, across my mind, flits the well worn thought of, ‘was that it’. Rational Me knows that this is ridiculous. Still, rationality takes a back seat and Irrational Me triumphs. I know this is a bad and dark hole to allow myself to be dragged into and it is a Herculean effort to force Rational Me back and send it on the daily task of kicking all the silly Irrational Me thoughts and fears back into the dark recess where I think they ought to stay.

Talking of dark holes, these are the parts of the mind that don’t show up on my MRI and are not easily quantifiable to my neurologist. They are impossibly hard to describe and when I get to my once annual review they seem like an odd abstract thought that, in trying vainly to describe, will take away from that valued visit for the ‘serious stuff’, making me loath to spend those precious minutes trying to explain the inexplicable. 

There are so many things to measure with MS, and the neurologists want to hear about them because that is an efficient clinic visit. Recording the measurables. How well you walk, pee, see, swallow, and so on. They like those sort of metrics as they can place you somewhere, measure stability or decline and tell you where you are in the journey of decline. The anxiety stuff?  The demons, the black feelings and so on? Most prefer to leave that to the staff of P-Wing because there is no EDSS equivalent that can describe the daily rollercoaster of emotions, that’s life. I always leave feeling as if everything that has been said is caveated with the equivalent of a warning on an investment product about the past performance being no guarantee of the future. 

Annoying as that is to both parties, in Multiple Sclerosis there has never really been a way to look into the future and reliably predict either the potential onset, extent, and/or severity of the illness in general or the relapses that characterise the earlier stages of the disease. So when they say that it is impossible to tell, they aren’t joking. Watch and wait is their motto. Hope and pray is mine. Either way, both are as uncertain as the other. They can measure what has happened or, at best, what is happening, and in fairness, who likes dealing in the what-ifs and the maybes? I imagine that every neurologist that has ever had to deliver a diagnosis of MS to some poor soul has been met with a version of, “what is going to happen to me?” and it is a very difficult question to answer. The ability to quantify anything with regards to that question is v tricky, and, in general, by the time a doctor has made it to the heady heights of Consultant they are well-versed in the delivery of difficult messages such as, hmmm, not sure really, we’ll have to wait and see. No looking into the future here. Move along. 

But there are some glimmers of hope! Whilst there isn’t the precision that I or my neurologist may want, these days there are tools that offer the opportunity to go beyond an educated guess.

I can think of three emerging tools that give real hope for taking a forward view. Neurofilament Lightchains (NfL’s), Optical Coherence Tomography (OCT), and Artificial Intelligence (AI) analysis of MRI. 

 1 – Starting with NfL’s, these are things that can be taken from the fluid that is drained during a lumbar puncture. They serve as biomarkers, a fancy way of saying signposts from our body, regarding three main things:

  • Risk of progression. E.g.: The how bad is this going to be doc, question?
  • Clinical disease activity. Not what you can or can’t see/elicit from patient recollection of symptoms or tests done to determine the level of effect at the time but what is actually going on in my noggin. 
  • Treatment response. Have you ever wondered if the DMT you are on is doing anything? I have a standard reply to people when they ask about DMTs for MS. I explain that unlike a paracetamol that does or doesn’t fix a pain, the DMT is taken with a belief in science and large scale clinical trials. They say it works and I have to believe that.The neurologists are in the same boat. We all have to believe in science that a good DMT increases the time between relapses and reduces the effects of a relapse when we do have them. We will, it is a progressive illness. A very rare few may experience no measurable progression in life. They are the exception that proves the rule.
From a Barts MS blog article

2 – OCT scans are a bit like looking into a supermarket barcode scanner when you have one. It feels like little bars of red light flitting around trying to determine the price of your eyes! What comes out though is amazing. They map the retina thickness and condition and compiled over time they allow an expert to see into the brain through the eyes. The presence or loss of ganglion cells (I am emphatically not an expert) also serve to let the doctor know what is happening in the brains of the patient. When they are done as a matter of course (not right now) they’ll also need someone to understand and interpret them, or they are pointless – this probably isn’t going to be your neurologist.

Presently, it still does not make a difference for the clinical management. But it’s very promising and much more convenient than brain volume measurements on MRI, and is probably going become very important in the future. 
This is a very promising biomarker as it is easily accessible and reflects brain damage and will allow the neurologist to quantify how neuroprotective a treatment is.

Part of my recent OCT scan
Part of my recent OCT scan

3 – Finally, AI examination of MRI scans is allowing doctors to identify different manifestations of MS. By seeing these they can better understand what is more likely to happen. An added bonus is that once a computer is sufficiently well trained and is running the right software it can be relentless. Humans get tired, need coffee, are distracted, miss things, misinterpret things, however diligent we are. People try their best but it is a boring and repetitive task gazing at slice after slice after slice of an MRI. To have a computer do that heavy lifting is infinitely preferable. This means that the human expert neuroradiologists get notified of the results and can verify and check the anomalies a computer picks-up that may go unnoticed to a human being, however good they are. 

AI looking at layers of the MS brain MRI

If you aren’t a little in awe by now then you need to get checked. This is amazing. For the very first time, there are tools and technologies that will allow our doctors to treat us for what they know is going to happen and not what they think might happen. It is the moving to precision treatment and not hitting everything with the biggest hammer they can lay their hands on. It is allowing patients to understand why their neurologists offer the choices they do and say some of the things they do. These days, only the most backward neurologists think MS is an on/off sort of disease. To say you aren’t progressing is inaccurate. A better phrase is, ‘with the tech we have available we can’t see anything at the moment.’ 

These tools are years away, not decades. The next time I see my neurologist I’ll be asking them how they think they’ll be deploying these technologies to treat me better? As for the mental strains, I still don’t know where to begin with these. I have found that it is likely to remain my job for a long time to come. But things do get a little easier when we know a bit more about what is around the corner.  Go science!

With thanks to Dr Sharmilee Gnanapavan (@neurognanapavan) and Dr Ide Smets (@SmetsIde) for ensuring I wasn’t talking total rubbish.

For some more in-depth reading there are links to some of the most recent work:

NfL’s – https://multiple-sclerosis-research.org/2021/04/do-you-know-your-neurofilament-level/

OCT – https://multiple-sclerosis-research.org/2021/04/only-your-eyes-can-show-the-suffering-dixit-fausto-coppi/

AI/MRI – https://www.nature.com/articles/s41467-021-22265-2

MS Forced My Marriage. To A Neurologist.

Receiving your MS diagnosis has to rank up there as one of the suckiest things imaginable. For most of us it is about sheer uncertainty that follows the words, “You have Multiple Sclerosis”. You may have known it was coming but you didn’t really expect it. To win the Really Bad Luck Lottery.

One moment you are wondering what is wrong with you and the next you are thrust into a mental washing machine of terrifying thoughts and emotions. What does it mean? What will happen? When will it happen? How bad will it be? Can I take it? What if I can’t? What about my relationships? What about my ability to support myself? Will I need a wheelchair? And so on. For the rest of your life there are never-ending variations of worrying about the what-ifs. It is very dull.

I have broken several bones in my life and each time I have been given an accurate prognosis based on the type of break, the fix, and my engagement with the rehab. It isn’t perfect, but it has rarely been inaccurate. Either way, there seems to be a certain clarity that neither I nor any of the people I know with MS have ever been fortunate enough to receive. If you bust a bone the orthopaedic doctor replies in a way that answers the broken-bone equivalent of some of the questions in paragraph one. However loosely. A relationship with the Orthopaedic Surgeon is a time-limited experience. They fix it, dispense rehab advice, and move on. We have both had a forced relationship that we could both end.

However, the standout feature of having a chronic condition that won’t kill you is the nature of your relationship with healthcare professionals and the healthcare system. It is entirely different. From the day of diagnosis you are forced into a long-term relationship – whether you like it or not – where your new partner is usually dictated by the geography of your local hospital.

Digest that for a moment; your new long-term partner is a function of where you live. Where. You. Live.

An MS diagnosis makes us the victim of a forced marriage – not arranged – where we never even got to meet the other half first.

One of the issues with MS is that you don’t die from it, you die with it and that fact seems somehow to make it less serious in the eyes of many. That is wrong, as anyone with MS will tell you. It is sad to say, but there have been odd occasions where death has seemed momentarily preferable to the MS. That is how much it sucks to have MS.

This unconscious downgrading of the seriousness seems to underpin a perennial confusion held by many of those treating our MS or having to deal with our MS. It is between understanding how MS feels and how it actually feels to have MS

Talking of feelings, nothing is more frustrating than not knowing if something is within your control. I have never ever met a patient that hasn’t wanted to intervene in some way in an attempt to control their newfound forever friend. We cast around, instantly becoming less risk-averse, read everything we can find, hear all the input from people ‘just trying to help’, and become far more suggestible to woo. After all, who doesn’t want a magic cure? I certainly do.

More than once in my 27y of MS, I have woken up feeling like I have never slept, or there is a new unexplained buzzing in my ears or pain somewhere. Is it MS? Everything now runs through the ‘is it MS’ filter. It is natural to seek an explanation for these new weird episodes in your life and who seems the most likely person to do this?

Why, it’s your new partner, the neurologist. That’s who. That incredibly learned person that you were forcibly married to at the point of diagnosis. And because we are now in a long-term relationship I want them to understand a bit about me; my hopes, dreams, aspirations, fears and so forth,. I expect them to shed a bit of light on what is going on, and I want the them to ask me how far I am willing to go, and offer me treatment based on my risk tolerance, not on their risk tolerance. It is me who has to live with it day to day, not them.

So, as my new partner, I expect quite a bit. Additionally, of this magic needs to happen in twenty-minute segments once a year. Perhaps unrealistically, but there you go, most long-term relationships have unrealistic expectations in them. Mine are clouded with genuine fear and worry because that is what MS does to you. I am not always the rational one any more.

In a rational world, I would like to think that my neurologist understands my frustrations, my fears, my uncertainty, my attitude to risk etc that I am feeling, but it doesn’t feel that way. Whilst medical school these days emphasises the patient more than it ever did, it still doesn’t cover forced long-term relationships. I get that it is a tricky balance as I realise us patients can be tricky buggers, over-egging things, being hypochondriacs, dangerous know-it-all’s educated by Dr Google and so on. It would be great to think that nestled in the vast amount of schooling that they have received the topic of long-term relationships with patients who don’t die quickly but get sicker and deteriorate over time is included. So far, I am not aware of any relevant training prior to being forced into a relationship with us. Awks for them as well, but then they don’t have MS. The fact remains that in choosing Neurology they have entered a field where they too are forcibly wed to patients by the vagaries of geography.

In a quest for answers and a bit of certainty, MS patients will also look to their doctors for emotional as much as purely medical help. All doctors will have heard variations on the question, ‘What would you do in my shoes, doc?’. Usually, they swerve them neatly as I am pretty sure this is a scenario covered off in ‘Being A Doctor 101′. To pass that beginners module they soon learn to cleverly redirect it, refuse to answer it etc but they rarely say, ‘I don’t really know the answer, but let me go and find out and I’ll get back to you’. That is because many still exist in a hierarchical world where that is simply an unacceptable ceding of control and a display of weakness.

We are not trying to wrestle the intellectual high ground from them, say ‘ha’, or gloat over something we know and they don’t. We are scared and worried about the future and have been thrust into an unplanned long-term relationship with them, and we look to them as the font of all knowledge. However unfair that may seem.

We would very much like to be treated more as an equal and not an annual inconvenience where our partner half fixes a smile, says how lovely it is to see us again, asks after the interest of ours they may remember about, makes understanding cooing noises, pokes and prods us for a bit and then come off as the font of all knowledge with everything to do with us and our condition.

“See you in twelve months; send in the next patient.”

We want more from this relationship. It can’t be transactional, we all need to be all-in, all the time.

It Is My Cargo

I wanted to hate it and I am told that I should hate it. Hate it like one hates a sworn enemy, that I must fight it and that a true fighter calls themselves a warrior. However, I do not hate it and I am certainly not a warrior. Truth be told, I always feel much closer to a devout coward than any sort of warrior.

Hating it and fighting it consume so much of the energy that I ought to conserve to manage my life, and who wants to live life on a permanent war footing anyway? That must be tiring and living is tiring enough; I am idle and lazy, and am not getting any younger so where is the fun in that?

If it is a war, it is an unwinnable one. Given that we often work so hard to deny the inevitable endpoint by avoiding the topic of the hard stop faced by all of us, we end up skirting the unwinnable part of any war on It.  But the journey always ends, for everyone. That is the only certainty. That and taxes. However bumpy the journey and whatever the cargo we carryif it is treated as a series of skirmishes and not a grand battle (the kind that needs a warrior) then it becomes far more manageable and far less tiring.

Reverting to the topic of youth for a moment longer, there are benefits in getting older and it is worth noting that when skirmishing with it, youth and enthusiasm are rarely as effective as age and guile. It is the application of cunning and intelligence, combined with a good dose of backstabbing and trickery, both tactics of age, that are more effective and can be a great deal more satisfying at times.

To manage it effectively one must first understand the classic ‘How do you eat an elephant?’ conundrum. You cannot do this in one sitting. Instead, you must cut it into bite-size pieces. And (to stretch the metaphor we’ll make it an everlasting elephant), in order to keep things interesting, you must learn to make a variety of dishes. Some are grand efforts and others are best served to the dog. That is the way of things and the way of life. Whatever additional or different wrinkles get added to your life, the tactics remain the same. Deal with it piece by piece. Long-term plans are for fools. Ask anyone who has tried.

The additional cargo can also be viewed as interesting, because it is. It grants us a journey that stands out from the other boring and regular ones that most of our fellow travellers have. It requires a special understanding, a greater level of engagement. And, if you do engage and do not look away then it makes a better person out of you, it sharpens you. It does not dull you.  It may be a biological bully of an enemy, but it is the type of enemy that I want to keep closer than any friend.

I want to know its strengths, its plans, and I really want to know its weak points. We will not stand off against one another posturing on a battlefield of prejudice and misunderstanding. I will speak sweetly to it, wrap my arms around it and bring it in close whilst making soothing sounds. Then I will hit it hard, where it hurts the most and where It is weakest. It is a bully and a they are never swayed by verbal bluster, they are defeated with by your actions, your lack of fear. Even if, underneath, you are petrified. Soon you become less afraid and that is liberating.

My actions will bend it to my will. I will poison it with the most potent elixirs that science can find, and I will adjust my life to hurt it and hinder it at every turn. This is not a one-time event; this is an ongoing series of skirmishes. I may not win them but if I can hold it to a score-draw then I will take that.

After all, the journey ends the same way for all of us, despite the different and interesting cargoes we carry. I intend to enjoy the rest of my journey. It is not all about the cargo. The journey through life itself is a many splendored thing that I can shape to my will. If I do not, then it will become heavier and heavier and I will see and feel nothing but my cargo: and I will have lost.

Dominic Shadbolt May 2020