Guest Post from New York

My friend (MSINTHEUS – on the Barts Blog) has sent me this and I agreed to publish it on theMSguide.com blog. It is an interesting take on reasons why you may not want to disclose your diagnosis. Enjoy. Any comments will be passed on as they need to remain anonymous.

Thoughts at 5 years post diagnosis

(aka what I wish I knew then, and what I want newly diagnosed people to know now.  This post is an adaptation of my original post. With apologies to most readers for my unimaginative American cursing).

Introduction

When you are diagnosed with MS, you get a lot of pressure to tell people about it.  That pressure does not relent.  This month I have reached the five year mark since the MRI that led to a rather quick diagnosis and one thing that hasn’t changed is the unreasonable pressure to disclose to friends and family.  In my case this message was continually applied by a well meaning social worker, by friends, by my doctor.  

Don’t believe me? Start with the first place people will be sent to.  The NMSS site for the US states: “Disclosing your MS to those closest to you — particularly those who know you well enough to know when something is wrong anyway — is the best way to rally the support you need to begin the coping process.”  UK is a bit less pollyanna, stating right there on the bloody homepage: If people know about your MS and how it affects you, they’ll be in a better place to offer support if and when you need it, but the message is the same. 

Tell people! They’re just waiting to offer support.  

Not so much, people.  

I am here to tell you don’t do it. Or at least think carefully before you do. It is a bell that can’t be unrung.  

If you, like me, live in a real world where people do not polish turds then you might welcome a different perspective, with data backed by science. So here is a handy guide you won’t get anywhere else.

Findings

Having had significant experience with market research throughout my career, as well as interpreting and explaining medical data, I conducted a carefully set up study which comprised of one carefully chosen subject: moi.   And of course even a scientific hack knows you need at least two studies to prove a thesis so I have included the experience of a friend in this analysis too with the same conclusions. The bulletproof scientific process* was as follows: I walked through every single person we had told and reviewed a few sentences on how they reacted in the moment, and over time.  We then looked across these reactions and bucketed those that were similar until we found three clear themes.  Therefore in this study I have come to the scientific conclusion that all people you might tell will react in one of three ways:

  1. The supportive, understanding person
  2. The weak person uncomfortable with human illness 
  3. The toxic person who will sense weakness and take advantage

Oh, you’d like examples? I’m so glad you asked.  Here are some examples of each:

Examples

Examples of reactions from supportive, understanding people

“I love you and I’m so glad you told me”.

Later asking “How are you feeling these days” and “would you like some more tequila” in the same conversation.**

Offering to accompany you to treatment, or to the doctor. Doing so for the nth time after you’ve said no each time. 

Putting important things like MRIs or treatment dates on their calendars without your knowledge and magically knowing just when to reach out to see how it went.

Talking to people you know and finding out who else has this, and learning more about this weird disease that unfairly targets the super young.

Sending you random “you got this” cards, or a plant, or a “best friends” mug, or a “fuck you, ms” shirt for no reason at all 

Without any fanfare, using the Facebook fundraiser to raise money for MS research when it’s your birthday

Randomly sending you articles of new science that may help. (Note I said science peeps – not yoga poses or kombucha recipes).  

Not treating you like a delicate flower, and still coming to you with their own problems – or concert tickets, because we all have our shit, and we all need a safe space to forget it for a bit.

And if you really want to know who your friends are wait until MS is in the news, like when the Regeneron covid antibodies were approved in the US for prophylactic use on high risk individuals, or when a celeb is diagnosed.  The people that text you that article asking “can you get this”? The people that learn about celeb diagnoses, and immediately start following them for you on Instagram trying to get a connection?  THOSE are your people, peeps. 

Examples of weak people who are uncomfortable with human illness

These people are actually very easy to spot in hindsight, unfortunately they’re usually people you thought would fall into bucket one, and then they disappoint you with their cowardice and inability to help due to their own personal discomfort.  The closer they are to you, the more it will hurt.  

Abandonment from a family such as a parent or inlaw who falls into this category is particularly insidious and painful, which is why I strongly recommend waiting to disclose if that kind of reaction will do more harm than you can handle at the time. Remember, stress makes MS worse so if telling someone will worsen your health then definitely don’t do it! 

These people are very easy to identify in hindsight.  Common reactions include:

Saying all the right things on the phone, then never speaking to you again.

Suddenly stopping inviting you to things

Avoiding you

No more texts, or calls, or emails – about anything

Ghosting you

Sensing a theme, peeps? We did too.

Examples:

I had a friend who I had a lot of fun with and thought was close to who I told.  She was nice and talked to me and would check in on how I was feeling, but she stopped inviting me out to things. I lost a big social outlet, at a time when I desperately needed some fun.

I reluctantly told some in laws, after years of telling no one on that side of the family, because their resentment at my perceived excessive Covid precautions made it necessary and I did not want them to take my refusal to get together personally.  After hearing the news on the phone and asking some questions, the phone call was cut off due to my brains’s failure to properly estimate my phone’s sad battery capacity.  I kept my promise to follow up as soon as  charged but that call was met with a text saying they were at lunch and would call me another time. Which of course never came. It was radio silence from that point on. No “I can’t believe you’ve been going through this and we didn’t know, how can we help?” No, “I’m so sorry this happened to you, thank you for telling us.” I was even ignored at in-person events from then on, they even snuck into Manhattan without telling me and made plans to see my husband behind my back!  While I know it’s not personal, that doesn’t stop me from feeling deep pain and hurt.  It’s hard not to take something like that personally.  I very much wish I had never said anything.

So, if you – like me-  think you will not enjoy the cold shoulder, or being treated like a leper, by someone who is supposed to be your family or your friend, you might want to hold off on the disclosure. MS is stressful enough without other people hurting you and causing you stress and grief because of their own unprocessed discomfort with illness. 

Examples of reactions from toxic people who will sense weakness and take advantage 

Some of these have happened to us, and some of them outside the “study”. But these are all real examples, and they do happen.  These people exist, and they actively and intentionally will do things to your detriment.  Examples:

An employer may cite “performance reasons” for an eventual termination (this has happened to people, be VERY careful before disclosing to an employer or a friend who is also a coworker. The misinformed make damaging assumptions)

A landlord suddenly raises your rent when you cite diagnosis and being in the hospital as the reason for the ONE TIME in years that you were late (this happened to a friend).  Sometimes you just have to be smart and aware.  Your weakness is someone else’s opportunity. 

A spouse may realize you may be dependent on them one day and may use that knowledge to become abusive, cheat, steal, generally mistreat you in other ways they would not have tried had you not been weak, or all of the above.  Sad, but it happens. 

A parent disinherits you, stops speaking to you, or acts in other ways that actively cause you harm. This happened to both myself and someone I know.  All the books say your parents want to help, especially when you are still relatively young, but none of the “helpful resources” out there that I have seen even remotely acknowledge that not everyone comes from perfect families and toxic narcissists can be found amongst parents, too.  In my case the disinheritance and immediate communication cutoff was promoted by a request for a small loan I foolishly made, then the actions were rationalized by made up fabrications of things I had never and would never do.  Yes, people! If you have MS you officially have the most expensive disease in the world.  According to most research 70% of people are no longer employed after ten years.  Yes, a diagnosis is shocking and life changing and you may need some help with unplanned hospital bills or time forced off work.  But how dare you ask your parents for any financial support! I mean, seriously, how selfish can you be? 

A note on children

Everyone says “tell your kids right away!”  As with all parenting advice, this is right for some kids, and not for others.

MS may be a life changing crap diagnosis but it doesn’t have a magic wand that magically takes away your instincts as a parent.  Keep being a parent.  That means doing what you think is best for YOUR child.  Think you want to tell them? Great! There are TONS of resources to help you with that.  Read them, decide for yourself if they make sense. Use them, or don’t. 

Don’t want to tell them? You know your kid best! In both myself and my friends’ cases we were under great pressure to tell our children.  We had young, anxious kids, who craved and needed normalcy. People didn’t understand. “They should know”, said “experts”.  In both our cases we held firm, and parented as we always had.  In both our cases we were met with great shame and pressure to make a different decision.

When each of us finally told our children, they were old enough to handle the news.  We also both realized there is a lot less anxiety that comes with “I have this and I’ve taken this medicine for three years, and so you can see that I’m ok, right”? vs “I just learned I have this and they’re advising I take this medicine and we’ll hope it works”. The latter would have been way too scary for my child.  Telling her when she knew everything would be okay took the fear out of the information because I waited until the unknown and unpredictable was known and predictable.  Turns out, predictably in their parents is a very reassuring thing to kids. Who knew!  I stuck to my guns, but it would have been much nicer if I didn’t have so much damn pressure and even in some cases shame from people for not handling things the way they thought I should.

Conclusion

In conclusion, before you disclose, THINK.  Think about why you are telling that person? What do you hope to gain? What of the three buckets will they fall into?  Everyone assumes everyone falls into the first bucket, and for many people most do.

But we’d be doing people a huge disservice if we did not acknowledge that this isn’t true for everyone, for some people reality does not reflect this and that is why you have me, to tell you the unfiltered truth. Really think about who this person is, and how they might react.  Will you gain more than you may lose?  Are you ok if they end up falling into a different bucket than you had hoped?  Are they in a position to cause you real harm if they fell into the last bucket?

Please seek out advice, as needed. But take all advice with a grain of salt.  The reality is that no one likes to talk about this unpleasant stuff.  And MS has a tendency to bring out the unpleasant in people.  

So if you remember only one thing, remember this: NO ONE GETS TO TELL YOU HOW TO “DO” MS.  

However you decide to handle it, that is the right way to proceed. 

SCIENTIFIC FOOTNOTES

*Because I believe in writing responsibly, I feel compelled to say out loud this is sarcasm, for those of you daft enough to have not yet figured that out. Despite the obvious (please let it be obvious) use of hyperbole for a little fun the conclusions, however, are real, as unscientific as they may be.  

**We may have been dealt a shit hand but FFS we’re not dead, people. 

Roadtrip!

Or, as I soon realised, it is all about having a purpose in life.

My good mate from University has a monumentally flaky girlfriend and they had planned this weekend as a lovely 3 days of walking in the most beautiful of places, the Lake District. For his birthday next Monday. And she bailed last night. Cue a phone call to Dom: can I go walking in the Lakes for several days with nearly all expenses paid, leave Sunday morning? Hell to the yes I can.

But it’s not really all about helping out a mate. It is the planning a road trip at the last moment element which is also fun for me, and very purposeful. Knocking out a few Wainwrights and Scafell Pike (pictured above) in mid-November is not without a host of weather-related hazards. I mean, who wants to suffer the indignity of being helicoptered off or having a Mountain Rescue team have to locate me because I have been an absolute cretin? This means I get to get the right OS map sheets, assemble my winter hillwalking kit, get the appropriately sized rucksack from my embarrassingly large one for every occasion collection, reproof my waterproofs, apply yet another coating of Leder-Gris to my trusty Altbergs, do an inventory of my gear, and bake two loaves of bread because we are self-catering in a camping pod in Borrowdale. Oh, I also need to check and adjust the tyre pressures in my car for the 6h drive and add my mate to my insurance. And get him a birthday card for next Monday because it wouldn’t be very sporting to wake up on Monday and forget the poor sods birthday?

I have had to cancel an interview on Saturday, will have to make a short video for theMSguide.com explaining that normal service (a Friday release of something good is what I promised; like voluntarily putting a gun to my own head but if I don’t have pressure/expectations/purpose then I am a lazy bugger) will be interrupted.

MS wise this is a ‘good thing’ because I have a firmly held belief that ensuring I have a purpose is critical to staying well. The fact that much of my purpose is focused on physical activity is a happy accident for my MS. There have been a few times in my life when I have allowed myself to drift and that way lies dragons. Dragons of inactivity, listlessness and mental anguish. Seriously, it is very bad for ones mental health to lack purpose. You can rapidly go to some very dark places where it can get very Hotel California very fast. And if that last remark puzzles you then imagine me sighing deeply, remarking about the youth of today etc and then reminding you of the immortal line, “Welcome to the Hotel California…where you can check out but you can never leave”.

I usually loathe stories with a moral but I will temporarily overlook that for a moment because the moral of this post is that if you don’t want to slide all too easily into a spiral of inactivity and mental health issues then it is critical that you have a purpose in your life. And in case you were hoping that someone or something is going to come along and give you that purpose then you are deluding yourself. Purpose comes from within and you need to construct it from what is there. In my case, today, it is helping out a chum and going walking in an amazing location.

Here endeth the sermon, I shall dismount from my soapbox and bid you adieu. I’m off to the Lakes and there is a lot to do before I leave.

Disclosure

Disclosure seems to be the theme of many MS strands at the moment, so I thought I’d add my two-penn’orth. My only advantage is greater hindsight as I was diagnosed with MS 28y ago. More than half my life has been lived with the diagnosis and it is fair to say that it has influenced every single aspect of my life. Recently, I started to reflect on what that has meant. 

Some insights are very gratifying and others are very hard to even think about. MS has alternately made me a much better person and, at times, quite the arsehole. I want to blame the bad times on the MS but I think it was in me and, at best, I can only involve MS in my rotten deeds and not blame it all on it. 

However, there are things I am extremely proud of that offset the episodes which make me cringe and I take comfort in the knowledge that there are far more of the former than the latter. I’m 52 now, so a fair amount of time has passed and it turns out that the cliche is true. Time is a great healer. 

What I am really saying to you is that it takes time to come to terms with your MS. I wouldn’t say I welcome it into my life but I am comfortable with its presence. The issue with disclosure, especially when it is all new to you, is that you need to jump ahead a bit so that you can ensure it is not frightening to others.

While you remain afraid of your own MS – and it makes perfect sense to be frightened of it; like skydiving is naturally concerning the first time – you’ll find it extremely hard not to communicate that fear to other people. Whether they be someone you fancy going out with or working for it will be the same, your fear leaks out. We’ve all seen it in others or experienced it ourselves. You can’t help but betray your anxiety. I am still petrified of bloody wasps (what IS their point?) and swat and wave at them. I then get some smart alec saying, ‘They can sense your fear’. This may be true, but I’m petrified of the damn things and it is a very rational fear in my mind.

So MS and disclosure? What useful addition to the discussion can I make? It is blunt so brace yourself. You need to get a hold of your MS and how it sits with you. Until you can stop being afraid of your MS it is very difficult to avoid communicating that concern to others. Whomever they may be. 

I resolved from Week Two to just plough ahead with life as I always have. If something has scared me (apart from wasps) I have confronted it head-on. Skydiving, big drops when skiing, hard climbs on the bicycle, scary climbing moves, dealing with aggressive idiots etc. the more you do this, like anything, the easier it becomes. In this case, it is managing your own fears. 
So I urge you: get therapy of some kind. See a professional, chat it over with your best friend, join a group (shift.ms or esupporthealth.com), go bungee jumping, come out using a video on LinkedIn (As my mate did recently. Six mo. after her diagnosis she owned it so no one else could put their spin on her story) but confront it, accept it and cure your fear of it because ‘it’ ain’t going anywhere. 

EDIT:

I’d like to thank my friend Kay for reminding me of something obvious I missed. Both she and I took it upon ourselves to give truth to another cliche: knowledge is power. We both got head down into researching and understanding MS from a patient perspective. This had led me to starting theMSguide.com in March of this year and more patient ambassador type roles. That is the really unexpectedly good and fulfilling thing from ths bloody disease. The idea that I can use my experiences to help others is very gratifying.

( this piece also appears on the Barts blog here: https://multiple-sclerosis-research.org/2021/10/disclosure/ )

Patient Involvement, Or Not?

Where is the patient involvement in designing the DMT guidelines for Multiple Sclerosis?

According to the NHS: ‘People and communities are important to us because they help us improve all aspects of health care, including patient safety, patient experience and health outcomes – giving people the power to live healthier lives.’  

The NHS England algorithm for using DMT’s says: ‘The purpose of this algorithm is to provide a framework to aid decision-making for multiple sclerosis (MS) specialists and patients, to help reduce excessive variation in practice, and ensure safe and effective prescribing. It is understood that there may be situations where there is no single ‘right’ or ‘wrong’ therapeutic approach, and different experts may reasonably hold different views. ‘

Despite these unequivocal statements regarding ‘the patient’, Multiple Sclerosis patients have no input whatsoever into the decision making process about what drugs are used in MS and when. It is as if the treatment of multiple sclerosis is so complicated, the syntax so specialised, that unless one is a specialised neurologist or similar then comprehension is simply beyond them.

Keeping the patient voice out of one of the single most important areas of our treatment speaks to the very old fashioned patrician Doctor knows best attitude. This gives the rhetoric around patient involvement a very hollow sound. Before the reply is made about MS Charity consultation reflecting the patient let’s put this to bed too. There are so very few patients with Multiple Sclerosis employed by these charities that when they claim to speak about the patient experience, that also rings hollow. Sure, you can ask them for input, to reflect patient attitudes etc but the replies you will get are mediated by people who do not have MS and, try as they might, can’t accurately reflect the patient experience.

If genuine patient involvement in MS care is to be more than just a phrase uttered by policymakers, to salve their own ears, by hearing themselves say it out loud at every available opportunity, then MS patients need to be directly involved in designing the NHS DMT prescribing algorithm. Repeated second-hand ad-hoc personal experiences or the representations made by well-meaning intermediaries are not a reliable or genuine substitute for including patients. Patient with lived experience of MS must be at the table and involved in both the discussion and the output. 

Until there is unmediated patient involvement in the construction of the prescribing algorithm, it is difficult to understand how the experts in MS patient care can do this while knowing full-well of the failure to involve the very patients who will take these treatments in the decision-making process. We, patients, are a very strange and diverse bunch when compared to the comparative uniformity of highly educated and very scientifically/technically/financially learned people who decide about drugs for our use created. The issues caused by allowing patients into the hallowed backrooms of clinical decision making are many and varied. Heck, I imagine disabled persons access/accommodation would rocket near the top of the agenda! These are not insurmountable hurdles, just different challenges.

Putting the patient’s names on the guidelines, having actual patient input into them is the very least we ought to expect, not the most we can hope for. 

Dear NHS, we want to be involved in the way that you say we should.

You talk the talk, but will you walk the walk?

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

An Ocrelizumab Patient’s Concerns Regarding Immunity After Covid Vaccinations

I started thinking about the information I was learning about this issue so I made a video for theMSguide.com

This then caught the eye of many and amongst them was Professor Gavin Giovannoni at Barts in London. If you are in the MS world it is hard not to have heard of ‘Prof G’. At his request I wrote an article for the Barts MS Blog on the topic. It is all about a patient perspective on how the possibility of how not being able to generate a full immune response to the Covid vaccine stands to impact on the lives of everyone who takes the drug.

Things are changing fast in the Covid world and I am confident that this will be a temporary issue. Nonetheless, I hope it isn’t a long form of temporary. Here is the article:

>>

I uploaded a video to theMSguide.com a few days ago talking about my concerns as an ocrelizumab patient and how the potential lack of Covid vaccine response stood to impact my life. I am five full infusions into this DMT and the fact that it appears to severely impact the ability to generate a meaningful immune response after a Covid-19 jab is administered is no fault of anybody or anything. It is what it is at the moment and no amount of wishful thinking will change this. 

Video 1

However, were I to be on the brink of commencement of ocrelizumab, then it is an entirely different thing altogether. Prof G  invited me to write a piece answering the question: ‘Should neurologists tell their patients about vaccine readiness before they start a specific DMT?’ 

In the vast majority of cases, patients are given the final say in the choice of DMT, so this becomes a rhetorical question. No one wants to think they had to make a choice with one eye closed. 

Moreover, patients expect this level of engagement as a baseline, not a privileged treat, and all the patients I consulted prior to writing this simply couldn’t comprehend that their HCPs (Health Care Professionals) would even countenance not raising this in one of two ways.

Firstly, if you are embedded with a therapy, as I am, then the expectation is that my team of HCPs are proactive in identifying and contacting the entire affected cohort with the news and how it may affect them. Specifically, without alarming people, the fact that the level of protection afforded by the vaccine is probably not the same as everyone ‘normal’ and advice on what to do in the meantime, as well as the steps being taken to change this gap in knowledge so that correct guidance may be given. 

Sure, the T-cells may generate some sort of an immune response, but as far as I and the clinical team that treats me in Oxford know  – and I’d be delighted if someone can share hard info on this – there is no data to show that T-cell immunity is equivalent, 50% as good, 10% as good etc. Perhaps it is 100% equivalency to the immune response that an ‘ordinary’ person receiving a jab will enjoy? Who knows at this point in time? The only thing that is certain at the moment is uncertainty.

The second scenario is if a patient is shortly to commence treatment with any drug considered to impact vaccine response. Pre-Covid, it seems that with ocrelizumab, issues were already being flagged in some circles. Before I even started treatment, I was asked to get the following jabs: Hib+Men C (combo), Men ACWY, DPT if it was more than 10 years since my last (it was), Meningitis B (2 jabs 4 weeks apart) and a pneumococcal jab (preferably Pneumovax which is 23 valet but subject to very variable availability in the UK or alternatively Prevenar 13. 13 valent as the name suggests and the one I did get). All of this was because the neuropharmacist(s), the microbiologist(s), and the neurologist(s) were concerned that ocrelizumab or any of the mab drugs used in MS may negatively impact the recipient’s ability to generate the appropriate immune responses to vaccination. According to Dr Gabe DeLuca, the lead MS neurologist in Oxford, this protocol is now going to be adopted nationwide. Remember: this was before some bat in the Far-East even started sneezing and running a temperature later in 2019.

For both scenarios, there is also the question of the almost certain need for booster jabs in the future. The dosing schedule of ocrelizumab and the time it takes for the B-cells to repopulate sufficiently after a dose means that a patient is more likely to be off their DMT in order to stay current with Covid boosters than they are on it and treating their MS. I would prefer not to have to choose between enjoying the protection of a vaccine and what that means regarding my ability to participate in society in a relatively normal way or treating my MS. 

I’d like to think that when HCPs learn about these emerging issues, their first instinct will be to wonder how this will impact their patients and immediately try to get in front of the problem. The next logical step would be to contact patients, explaining the issue and the implications for their lives, followed by suggestions/options to address this. Sadly, in certain parts of the UK, a few will sigh to themselves and see this as an added layer of hassle.

All this comes around to the question Prof G asked me to address. Yes. Indeed. Absolutely. Neurologists should tell their patients about vaccine readiness before they start a specific DMT. I and everyone I know with MS want to believe they are making a fully-informed choice. 

I have then uploaded a second video a day ago reflecting some of the reactions to my first one from a week ago. 

Video 2

As it stands today I must continue to behave as if I am unvaccinated and still as vulnerable as I was, whilst gradually most around me will, through the vaccination program, be able to resume a more normal lifestyle. A lifestyle that I also enjoyed alongside them until lockdown affected us all. Until I have an assurance that a vaccine will work for me – therapy change seems the most obvious option as a layman – then I shall have to remain locked down. And that is wrong.

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The blog (a must read if you have MS or are a professional involved in the treatment of MS) is here: https://multiple-sclerosis-research.org/2021/04/guest-post-from-an-ocrelizumaber/

Here you go, hold this.

Anyone who has grown up with male siblings, I have two brothers, knows that any phrase starting with, “Hold this…”, doesn’t usually end well. It is up there with the truism that most teenage boy’s trips to A+E are usually prefaced with a yell of, “Hey everyone, watch this.” 

Getting diagnosed with MS felt just like being passed an unidentified but definitely suspicious device by someone far more trustworthy than my brother. Based on that trust I took it, unquestioningly. Bad idea. Greeks bearing gifts and all that… You gave it a metaphorical shake, heard ticking, saw the faces of the others around you and realised that this was not a good thing. No one was sure what was going to happen, but you were certain from the looks that nothing good was going to come of it. It was more a question of If rather than When it was going to explode.

This is a Multiple Sclerosis diagnosis. There are no backsies. This unexploded brain bomb is yours for life and at no point can you hand back this uninvited contribution to your self. From that moment on you are no longer just You but You and MS, and what happens from that moment onwards is that as well as dealing with life you are now committed to trying to manage this unpredictable addition of an unexploded brain bomb. Oh, and by the way, just en passant, it is rare that other people can even see this new addition to You. Your new ‘forever’ ticking bomb.

I cannot emphasise enough that an MS diagnosis is made so much worse by thes unpredictability and it is the real mental grinder for me. I have had MS for 27 years now and not a day goes by without me wondering, several times a day, if this is the Last Good Day. You know it is ticking. You know it is going to go off. You know it won’t kill you. And You know it will just make your life immeasurably worse.

Good Day, by the way, is a relative term. With MS you start to judge yourself against what you know can happen when the bomb decides to go off in your brain. Over time the things that you considered to be a normal state of affairs are just concepts in the rearview mirror. For example, deterioration of certain eyesight and balance functions mean I can no longer safely cycle, ski, ride motorbikes, play squash, or shoot. It is small but it is enough to stop me. I try not to hate the MS and I try not to dwell on my many losses but I can never forget that they are the fault of my MS.

No one sees me not doing those things. They see me walking a lot and think to themselves that I must be fine. I know it is displacement to walk a lot and I am fortunate to be able to do that (with poles, obvs). I love walking but I only got into it when I lost the ability to do the things that were my passions.  The cheery optimist in me tries to focus on the benefits but the nihilistic realist in me can never forget what brought on this state of affairs.

Nihilistic I may be but I decline to get annoyed that people don’t take into account my hidden illness. The clue is in the word hidden. The vast majority of folks don’t want to hurt, offend, upset, or discriminate and the vast majority of healthy people are made a little bit uncomfortable, as at some level they are forced, even for a moment, to consider their own health and ability. To get and remain annoyed with perceived insensitivities entails working up some venomous thoughts and retaining them, and that injures me far more than anyone else.

Call me selfish but I am increasingly in life for the mental health of No.1. It is harsh, I don’t like it but I need to ensure that I don’t upset this increasingly, and usually hidden, delicate balance. For this damn bomb could go off at any time.

Tick Tock. Tick Tock

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.

Flipcharts and Marriage Guidance

For a chap who likes to believe he is fairly good at things he puts some effort into, it seems I am pretty crap at relationships. My current wife excepted, obvs – love you so much honey. Mwah mwah. I do care. Really, I do. Despite my efforts to cultivate a gruff exterior I am really quite a thoughtful fellow. Honestly. At times. When I remember.

I guess that is what you get when raised by a strong woman with no regular father figure present. My mother, for the record, was the Governor of a Maximum-Security Men’s prison. I remember her telling me a story of taking over a prison, getting the guided tour by the Guards, and when the inmates saw that it was a woman, they all started swearing and cursing  to rattle her. She walked to the end of the Wing, turned back and addressed them all with a little smile and the observation, “Gentlemen, you’ll have to do far worse than that to upset me. I have raised three boys and they can all swear better than you.”

But back to relationships for a moment. I really don’t get why people pay so much for therapy. Having ‘A Therapist’ strikes many of us Brits as a certain type of American peculiarity. If you face into thoughts/feelings/emotions etc and be honest with yourself (I grant you that it is not easy nor pleasant, but it is certainly cheaper and not as cringeworthy as telling it to another only for them to reflect it back to you asking you what you think it means and then charge handsomely for it) then you can come to a reasonable conclusion about the serious things.

My ex-wife, when we realised things were tough, convinced me to come with her to a marriage guidance counsellor in Oxford and I agreed. Hell, we were getting nowhere, knew things weren’t that good and were at a loss for suggestions. I bit back my inner cheap-gene feelings about paying someone to tell me what I knew, albeit suppressed nice and deep like any good English person does with emotions, and went along with an open mind. The Marriage Counsellor was very pleasant, welcomed us in and started by explaining that she’d like to get to know us better. So far, all very reasonable sounding. We smiled and nodded obligingly. She started by producing a flipchart and explaining that she wanted to chart our families in order to understand us better. One for each of us. “Let’s start with you, Dominic.”

I can say definitively that that is the exact point where things started to go downhill. You see, at that time in my career I was facilitating a lot of workshops, several days a week for three years. It was mostly my job and I knew just how much information fit on a flipchart sheet and just how small you can write with a flipchart marker. In short: I this was an area where I felt qualified to make this type of simple judgement.

At this point I interjected and, smiling back, observed that she’d need more than one piece of paper for mine. My ex-wife also smiled, nodded, and agreed. For she too, being in a corporate job, was no stranger to the limits of a flipchart. The Counsellor smiled back – there was an inordinate amount of smiling by this stage – far too much in my book. Neither I nor my ex did the overly smiley stuff. Nonetheless, artificial facial muscle distortions aside we both knew that one sheet of paper was simply not up to the task for my weird and wonderful family tree, no matter how small she could write with those chunky markers.

The Counsellor– still bloody grinning like a demented Cheshire Cat, are they trained/ordered to smile. All. The. Time? – demurred and explained that she was more than capable of doing this. I smiled back and reiterated again that this was not only unlikely but impossible. She scoffed, doubled down, poised her pen, and dragged the flipchart closer.

It was at this point that we lost faith in her entirely. I was suddenly overwhelmed by that feeling you’d have if someone started in on your hard earned cash and was setting fire to the notes one by one. The only small relief was that we had not pre-purchased a block of sessions with this demented grinning woman. Thank God for small mercies.

Whatever we may have thought of one another – the clue to the outcome is in my application of the prefix “ex” – at that moment we were quite united. Whatever we may have disagreed over we both knew that my family tree was one giant shitfight and would defy a single flipchart page. Still, we both silently thought, it was going to be great fun seeing her try. In the end it went to three full pages and neither of us was so graceless as to indulge in a ‘told you so’. We didn’t have to. She knew.

Looking at the bright side, it turned out that we had spent £50 on an hour of pretty good schadenfreude. I just patiently answered her questions, and, at my insistence, we only went from my parents to the present day. If she had bothered to ask before marching so far out on her limb of flipchart defiance and setting out her stall of certainty, I could have explained that my mother had been married three times, my father four, I have one full brother, two half-brothers, one of whom I have never even met, a stepfather, two stepmothers, a step-brother, and a step-sister.

The Gift That Keeps On Giving

Can you remember growing up when the school fete always had a drum with the numbers folded up and for the final event of the day some older worthy cranked the handle a few turns, dipped their hand in, and produced a little scrap of paper with a flourish? With great care, they’d unfold it, squint at the number and then read it out. The hushed crowd would consult their row of ticket stubs bought to support the school under the pretence that they wanted the value basket of meat or the half-case of Blue Nun? When I was a kid that was the highlight of the day. The anticipation, the crushing defeat, the look of triumph on old Mrs Miggins’ face as she trousered the plonk? All of that. It was the competition of the year. You wanted to win it but you never did.

How about this for a lottery win? You’ll have to change gear – I’ll wait, the gears are a bit worn and unlubricated at this point and are altogether slower if you have MS – and remember the time you actually won another lottery. One that you had never heard of, one that you don’t recall entering, and one that you definitely didn’t want to win. When you did find that your number had been chosen you couldn’t just decline it or quietly re-gift it after a respectable amount of time had passed?

That is what it is like to get an MS diagnosis. The confirmation of diagnosis conversation is about being randomly gifted something you didn’t want, can never give back, gets worse over time and you have for life. In the lottery of life, you lost out big-style.

You can break many bones (as I have) and perhaps you are never as good as you once were, but they can be put behind you with time and physio. A well-known London Neuro has had some very unfortunate first-hand experience of just this recently. Thankfully, they are recovering quite well.  However, MS is not one of those things you can recover from. MS is incurable. It is manageable for most people, but it is incurable for everybody. You don’t make a recovery no matter how hard you try.

In the last 15 or so years, a plethora of medications to treat the disease have come on the market. None of them are cures, they are all just chemical brakes. Some are the old asbestos-lined drum brakes, and some are the latest carbon-ceramic ones. They are all just brakes though. They can slow down the process, but they can never stop it. The overall aim of these disease modifying treatments boils down to two components. These are:

  • to delay the onset of disability and
  • to reduce the severity of it when it occurs.

That is it.

No cure.

None.

Just brakes.

MS patients are terrified by the thought of losing their physical and mental abilities in the insidious creep of the disease. For many of us there is a tipping point where we go from oscillating between good and bad, into a gradual decline where the only update you hear is about getting worse.

Having MS is about becoming progressively disabled as you age. The accrual of some of these disabilities is visible to others though many are not. Walking with sticks, needing a wheelchair or a colostomy bag are things others see. The crippling fatigue – that you can only describe as tiredness, which doesn’t do it justice – is one and the so-called cog-fog is another but no one sees it. You feel lazy and a slacker and want to do better but you just cannot get out from under this damn feeling of being Sisyphus.

The idea of not being able to string two thoughts together is also incredibly annoying. It is a million times more annoying than the feeling you get when you arrive in a room and stand there blankly knowing you came in for something but know that you have totally forgotten what that thing is. It is that. With bells on. It is the frustration of knowing you are mentally underperforming, knowing you can do better, knowing you used to be better but no longer being able to connect it all up as easily, if at all. And the most frustrating thing of all that? Knowing it is the MS deterioration and will never improve.

You can treat some of the effects of MS with other medications, be they drugs that help tight muscles unwind a bit so you can walk a little less balled up and with less pain, to drugs that help clear the cog-fog a bit. They are all sticking plasters and nothing is the same as it once was.  I feel pathetically grateful for these little bits of relief.

There are not that many chronic diseases that are as long-lasting as MS and as disabling as MS. These days you rarely die of MS, you die with MS. This rather sorry fact means that it is hard for people to take it as seriously as a person you know  (has happened to me a few times) who is killed by cancer in 6-24 months. Their struggle becomes heroic in the eyes of people they have never met. Yes, they fought it hard and nobly. Every single day. And it won, every single time. And then, over time, most people forget them. This is the bugger with MS. It just doesn’t go away and it doesn’t just kill you either. It is there. Gradually disabling you. And you know it and people forget you.

And yet the same refrain keeps playing; MS is incurable.

MS means you will deteriorate. Slowly at times and faster at others but all the deterioration shares a common theme. It will not get better and it cannot be reversed.

I write this, not as a pity party piece, but because I am increasingly frustrated with the care I am receiving. Or not receiving.

With previous doctors, I never questioned the idea that they got it – my MS and MS in general – to a greater or lesser extent. By getting it, I mean at a human level. Not just the aetiology of the disease, the examination of stained slides under  microscopes, the conferences, the papers, the books, but the way this ghastly disease is ever-present in my life and my mind. Every day. Wondering what the next episode will be. As a patient you just want your neurologist to have a degree of empathy with how it feels to have MS.

Not how MS feels, but how it feels to have MS.  They are two different things entirely.

For the first time in 26y of MS I suddenly feel that I no longer have a neurologist who shares my treatment goals, gets me, gets my attitude to life and my attitude to MS. Instead they are a complete ‘book smart but not people smart’ sort of person. I think they find it very hard to actually engage with patients and aren’t a great communicator. It certainly isn’t intentional, just quite tone deaf to feelings.

On this journey you need friends and allies and most of them come from the medics that treat you. You need to turn to them and you want to rely on them and when you suddenly feel as if your only advocate is you, the main researcher is you, there is just one person fighting your corner (hint: still you) it is quite upsetting. Discombobulating is a word I like the sound of but rarely have any real reason to use. Here it is perfectly onomatopoeic and describes the feeling exactly. It is discombobulating. A team effort has suddenly turned into a whack-a-mole process where you are constantly anxious that you have overlooked something, failed to ask a question, failed to take a stand or overlooked something you didn’t know you didn’t know but it turns out it would have been helpful if you did know the thing you didn’t know you didn’t know. And your brain ain’t what it used to be and you know that your mental decline alone is probably allowing things to pass by unremarked on. Things you hope that the neurologist will remember.

On top of this I chuck in ageing – I am 51 now – into the pot and know that there are several things that don’t happen after 55 because you cross some invisible Rubicon which disqualifies you from doing things, like taking part in a clinical trial, for instance. Just the idea that one day in 2024 a switch is flicked and my eligibility is no more is quite worrying.

I want stem-cells. AHSCT, which is the nearest thing to a reboot of the body’s immune system, is not a guarantee that I will skip merrily into a halcyon future. I get that. It is, however, the last shot for me. The fact that my neurologist is a hand-wringer par extraordinaire means that they don’t really believe in that. Perhaps they might be a bit more sympathetic if I were very disabled – a doctor way of saying that they know it is risky and if you die it was your last shot so worth it – but they don’t see it as something for people who are not yet as disabled, like me.

I think that idea is nuts. They have no idea what it is like. If I, an informed patient is willing to take the risks then I struggle to see why I can’t do this. From a pure economic viewpoint I am on an awfully expensive 6 monthly infusion and if nothing changes I am likely to make it another 20 years. That is a lot of money. I will decline in that time and I will need greater input from the health care system, extra services like physio, an FES machine for my right leg, orthotics, the drugs I already take to make the infusions not ruin my skin, the ones to help me grasp at a semblance of mental normality for a few hours a day, and so on.

AHSCT is about £90k privately. However, if it is just costs being covered in the calculation then I imagine it is a fair bit less on the NHS. It either works long term and everyone is a winner or it wears off in a few years, so it is break-even: or at worst I am killed by the cure and – financially speaking – the NHS is the winner. There are variations in between but you get the gist. My beef is that my attitude to risk feels overlooked despite how informed I may be.

This is not all Negative Nancy stuff. Life goes on. I do stuff, I volunteer for MS charities, I pursued PhDs for a while but have failed so am going to take some professional qualifications to try and find work that I can fit into the restrictions on my life because of my MS. I wake up every day and am thankful that when I open my eyes I see daylight and that I am able to do many things some of my MS friends cannot do. I admire how they get through it every day, wonder if I could show the same fortitude, wonder when it will be my turn, and try to keep such thoughts from my head as they are not conducive to being productive.

Overall, though, I am really dogged by the neuro thing. I think I’ll have to change. That means losing a relationship with one of the most amazing MS nurses I have met and schlepping to a hospital that isn’t on my doorstep. The thing with the NHS is that it is theoretically possible to do this but if everything goes like clockwork it will take a good year. And in my head the countdown to 55 is becoming ever louder.