Three Years With Multiple Sclerosis

Aren't I a little old to be taking selfies? Probably. But who else is going to do it?

Diagnosed with Multiple Sclerosis: Three Years On

Last month, I arrived at the three-year mark since my diagnosis with multiple sclerosis. Three years! For some reason, this anniversary is hitting me harder than either of the previous two. It's possible that I've now entered some strange post-diagnosis limbo, as I'm not sure if I can still classify myself as newly diagnosed. I still feel newly diagnosed, and I still feel I'm only just coming to terms with my diagnosis, but if I'm not newly diagnosed, should I still feel this way? Or perhaps this three-year milestone is hitting me because things have settled down somewhat - my treatment has settled, as have my symptoms, and I'm now in something of a routine. And ... bleugh ... I still have MS. Yeah, I was really hoping that at some point it'd all just go away. But it hasn't. Which gives me a lot of time to reflect and dwell on where my life is and, more importantly, where it's going.

How Am I?

Well, apart from the old MS, I'm very well - thanks for asking! My symptoms haven't really changed. I still suffer considerable neurological pain, primarily in my legs. This comes and goes and, apart from when it gets really bad, I consider this to be one of my lesser symptoms. To some degree, I can fight the pain; I can try and distract myself from the pulsating saw blade that reverberates deep within my muscles. It's only when it gets really bad, when it overwhelms my senses and ability to push through it, that it really gets me down. Thankfully, this doesn't happen too often.

The worst symptom, however, the worst by a sclerotic mile, is the mind-clouding, focus-sapping, energy-devouring fatigue. And no, this hasn't got much better. It comes and goes, so that some weeks I feel very well, while for others it feels like I'm rarely out of bed, and when I am I'm like an extra from The Walking Dead. Unlike the pain, there is no fighting against or pushing through the fatigue. I have to submit to its mercurial will - when I don't, I invariably make myself worse. A few months ago, I kept a sleep diary for my neurologist and over a two-week period recorded sleeping on average between 16-18 hours a day. Granted that was a bad spell, but even during good times I can sleep an inordinate amount. During my most recent appointment, the neurologist told me it was the worst case of MS-related fatigue he had personally dealt with. For everything, this is incredibly challenging - for your mental health, your spirit, your practical responsibilities. With fatigue, it can feel like your life is being sucked away into nothing.

There are other peripheral symptoms, some of which are probably manifestations of the fatigue, which can make me feel very squiffy at times (that's the best word I've come up with for this - for when I feel very MSey). It's a mixture of everything - my balance feels off, I become clumsier, I have difficulty remembering things, and I can't concentrate on anything. My tolerance for noise, activity and people also diminishes considerably when I'm squiffy. In other words, I become a grumpy git. Unsurprisingly, I hate it when I feel like this.

My wife and daughter cleverly synchronise blinks while on holiday in Romania

What Am I Up To?

Oh, y'know, so much! A bit of this, a bit of that ... all kinds of things! Well, I wish it was like that, but I do try to keep myself as busy as my energy levels allow. I'm still not working, which is a source of major frustration. As someone that has always worked, and enjoyed his work immensely, I do the miss the routine and excitement that my job gave me. While in the beginning I was hopeful of making a full recovery and returning to my old profession, I now think this is unlikely. From my own research and discussions with my doctors, it would seem that any symptoms that have persisted for as long as mine are likely to be permanent characteristics of my MS. If that's the case, I don't think my former career as a private investigator is suitable or manageable. I am, however, hopeful of finding a new line of work, and am making active investigations to doing so now.

So what do I do with my time? Well, I write another blog called Lexicolatry, and I'm delighted to say that that project has rescued my sanity a thousand times over. When I first fell ill, I couldn't read well due to cognitive difficulties - however, I was able to read short amounts, and so I decided to slowly work my way through the Shorter Oxford English Dictionary. The blog charts my progress, and each day I post a new word of interest and a short commentary on why I find it interesting. The blog has done well, has a core of regular readers and commenters, and was even nominated for an award last year. To any of you that read Lexicolatry - thank you! I really can't express to you quite how much help that blog has been to me during difficult times, and your readership, comments and insights have been a huge part of that. And if you don't read Lexicolatry, do please have a look by clicking here.

Other than that, I've taken up archery. I miss sport a lot, and although I've tried several times to get back into playing football, I just haven't been able to do it without making myself worse. Archery seems a good choice because it gets me out of the house and is well within what I can comfortably manage, even if I don't get out to do it nearly as often as I would like. I also try and exercise regularly using the gym at the local MS centre in Galway. This has been really, really useful and I would encourage anyone with MS to join their local MS society for this reason. I participated in a three month programme with the University of Limerick studying the benefits of exercising using a Vibroplate machine, and that was organised through MS Ireland. I haven't yet met with the lead researcher to discuss my final results but, despite it being hard work and (at times) painful, I felt the exercises really helped me. I'll write a post on the subject when my final results are in.

Finally, of course, there is my family. My beautiful daughter is five now, and my lovely wife is as caring, patient and supportive as ever. And, our big news, we have another baby on the way! If that doesn't prove there's life in this old dog yet, what will? And yes, to all my friends and family, don't think I didn't notice that raised eyebrow when I told you we're expecting a baby, the eyebrow that said: "Really? You can still ... I mean ... you're still able to ... even with? ... well congratulations!" Our little boy is due in October, and I find it both terrifying and exhilarating in equal measure.

Where Am I Going?

The future is something I spend a lot of time thinking about and, to be completely open, is something I find very frightening. I've always spoken about the horror of being told I have an incurable and degenerative disease, but it's during the quiet moments alone with my thoughts that it can really get to me. How will I cope if I become seriously disabled? How will my family cope? How could I burden them like that? If I struggle now, how will I cope if a serious relapse makes me even worse?

When my mind wanders these dispiriting paths, I remind myself that the truth is blunt: I can't change my future. Of course, I can maximise my chances by maintaining my treatments, living healthily and getting as much exercise as I can, but beyond that it's out of my hands. Therefore, I must make the best I can of the present and not become bogged down with the what-might-be trains of thought. Rather, I try my best to remain optimistic, and I fight the occasional flashes of despondency that surface from time to time.

We're expecting now, of course, so that will dominate our lives for the foreseeable future. I'm also considering a return to college with the view of training in a field that would accommodate my illness, perhaps in writing or languages. I also plan to write more on the subject of MS. A number of people have contacted me saying that they appreciated this blog, and asking me if I would be writing more. Well, yes, I will be, including writing about my own experiences and writing about the (frequent) news that surfaces regarding MS research. If you're not already a subscriber, there's an email subscription box so you can make sure you receive every post.

What Have I Learnt?

Three years of living with MS has taught me a lot. For one thing, I'm learnt not to expect others to understand my MS, or what it's like for me and my family. The blunt truth is that unless you have MS, and unless you have MS with the same symptoms as me, you can't - you just can't - understand what it's like. And that's OK - I don't expect you to. I now try not to judge or become too frustrated when others think they do, or say something insensitive, unhelpful or just downright stupid. In learning this lesson first hand, I think it's made me more aware of this problem, of the impossibility of truly understanding the struggles and hardships of others. In this regard, I think that MS has made me into a better person.

And finally, I've learnt (or am learning) to live in and appreciate the present. While the immediate future might be full of uncertainties and worry, if I allow my mind to pull these anxieties into the present, it will doubtless ruin whatever I have now. Therefore, it's a matter of making the best of what I have and what I can do, rather than fretting about what I don't and what I can't.

This three years hasn't felt like a long time, and I think I probably am still newly diagnosed. But the experience and lessons I've learnt in these three years makes me feel better equipped to deal with whatever the next three will throw at me and my family. And for this, I'm grateful and optimistic in equal measure.

[Insert inspirational quote about aiming for your goals here]

Please feel welcome to leave any comments in the box below.

'Best Blog Post' Nomination with Blog Awards Ireland

This post was nominated in the Best Post category of the Blog Awards Ireland 2014.
It's a public vote, so if you enjoyed this, please consider going to the Best Post list and voting for Multiple Stupidness.
You can get there by clicking here.
Thank you!

How MS Fatigue Affects My Writing - A Short Essay

What Keeps Me From Writing?

My deficient brain is what most often keeps me from writing.

In the past, it was all of the usual excuses: I was studying, and then I was working, then I had a family and a child, then I was building a career, etc, etc, ad nauseam.

These days, my life is very different. I still have a family to care for, but I’m not working, nor building a career. Time is no longer an issue. I have plenty of time for anything I choose, so I indulge myself in something I always thought would come later in my life: writing.

However, the same reason that keeps me from working or from following my career will often keep me from writing too. There is something going on inside my brain that affects my thinking, and it’s a truism that if your thinking is affected, your writing is affected also.

Multiple sclerosis (the disease with which I have been diagnosed) is so called because, literally, multiple scleroses form in the brain and spinal column. Sclerotic, an adjective of the same root, means, among other things, hardened, stony in texture, unmoving, unchanging, rigid.

It is trying to think through my sclerotic synapses that most often prevents me from writing. My mind constantly has to take the long way round, pushing through foam and fog and dense clouds of doubt and uncertainty. Where once there was clarity and fluency, there is sluggishness and torpor; where once there were bright, vivid memories, there are black voids of nothingness, empty holes in my mind that frighten and disturb me.

It’s not constant. For some reason, sometimes my brain seems able to return to a semblance of its former self, and during these fleeting hours I dash out words with a juvenile enthusiasm, gaily plucking adjectives and adverbs and verbs and nouns from the darkest recesses of my memory and ramming them together in the most ludicrous and haphazard fashion.

But it always returns. It will again ache inside my head as I attempt to push through the morass. I press my brain and try to squeeze out words and meaning, but it dispirits and exhausts me. Struggling against it is in vain. With minimal exertion, my synapses seize and an impenetrable darkness descends, choking off thoughts and suffocating my words. I can do nothing but retreat to my bed for hours at a time, hopeful that when I wake the darkness will have cleared.

While it’s dispiriting to think about this (and even more so to verbalise it and put it to paper), it’s also encouraging. It’s a reminder that, even now that I have plenty of time, it’s still of utmost value, and must never be taken for granted. Minutes of clarity must not be squandered, nor hours or days of ability and energy. My time will be more focused – it has to be. That being so, I can resolve that my time will be more productive than it ever was, than it ever could have been, with my pre-sclerotic brain.

- - -

I wrote this short essay recently after the subject of what keeps us from writing was proposed at a writing group I belong to. I intend to write a longer, more general piece too, as MS fatigue is something that's hit me hard; as one of the most common symptoms of MS, it's something that hits a lot of people hard. It's also one of the most misunderstood symptoms. The word fatigue completely fails to convey the reality, making it sound synonymous with being tired, or a bit low on energy, etc. This essay, however, was an opportunity for me to try and describe, during one of my more lucid periods, what the fatigue is actually like and how it impacts on something I love: writing. I hope you enjoyed it.

Vitamin D Supplements Recommended

Little Missed Sunshine

The night after I was diagnosed with multiple sclerosis, I sat up in my hospital bed for the entire night, feverishly scouring the depths of the internet on my phone for information on treatments, cures, remedies and therapies. Of course, being the internet, I found them in abundance, and I diligently wrote down notes so that I could question my neurologist when he did his rounds the following morning. Yes, he had told me that MS is an incurable disease, but surely if I just searched the internet hard enough, I would find something he had missed in all his years of medical training. When he arrived the following morning, I was ready and waiting, armed to the teeth with notes and scribblings on everything from dietary control regimens, curative creams, interventionist surgery and Shamanic Rituals. OK ... not the Shamanic Rituals, but you get an idea of where my mind was at during this time. 

It was a necessary but somewhat disheartening meeting. He patiently sat and listened to me as I worked through my night's research, ticking items as I went and making notes from his responses. Before long, the conversation had acquired quite a predictable pattern: 

Me:      So ... this one ... [I name some therapy that I've found on the internet].

Him:     Yes, I've read about that, but unfortunately the scientific evidence for its efficacy is very thin.

Occasionally, he wouldn't even be that generous toward a given therapy, and his answer would be that there's no scientific evidence or, worse still, a particular treatment is downright dangerous. I know some people will immediately assume that he was just rubbishing treatments that he wasn't familiar with, or hadn't been trained in, but this wasn't the case at all. With most, he was already familiar with them (rather than it being a complete unknown), he often had patients that were trying or had tried a particular treatment independently, and was often able to give specific reasons why the evidence for efficacy was poor ("in that study, the control group was very small" / "that's never been peer-reviewed" / "the initial results have never been replicated," etc, etc). 

However, one of my questions did yield a positive result. 

Me:       What about Vitamin D supplementation? 

Him:      Yes, there have been a number of studies that show beneficial results from boosting vitamin D levels in the body. 

Thus, having continued my research into the benefits of vitamin D, I've been taking a supplement daily ever since then. Has it helped? Obviously, I can't really be sure. I hope it has, of course, but it's completely hassle free, just one more small tablet in my daily assortment of tablets, and I didn't have to pay some nutter on the internet $50.00 to read a badly-written book about it.

Of all the vitamins that humans require, it would seem D is a trickier one than most to come by. It's often called 'the sunshine vitamin' due to the sun being the main source. However, if you live in the British Isles or Ireland, this poses a very obvious difficulty. Vitamin D is also found in certain foods, but it would seem that getting sufficient levels of it from your diet alone is difficult for most and not very practical. 

Interestingly, though, there have been a number of recent studies and news items espousing the benefits of a Vitamin D supplement generally, not just for those with specific medical conditions that seem to be helped by them. The British government recommends a vitamin D supplement to specific groups, namely: pregnant and breastfeeding women, children aged six months to five years, and people aged 65 and over. However, it also recommends such a supplement to these groups: 

• People who are not exposed to much sun
• People who cover up their skin for cultural reasons
• People who are housebound
• People who otherwise stay indoors for long periods of time

In fact, the Royal College of Paediatrics and Child Health (RCPCH) says that perhaps 25% of UK children are vitamin D deficient, and a recent report by the BBC suggested that half of the UK's white population, and up to 90% of the black and Asian population, are similarly deficient.

This is of concern because a lack of vitamin D is linked to a number of diseases, including diabetes, tuberculosis, rickets (cases of which are on the rise in both Britain and Ireland) and ... you've guessed it ... multiple sclerosis!

Below, I've linked several articles that you might find interesting on the subject of Vitamin D.

• Cheap Vitamin D 'Would Boost Health'
• Action Needed on Vitamin D Levels
• NHS Choices Vitamin D Fact Page
• MS Society article on vitamin D and multiple sclerosis
• Food Safety Authority of Ireland Q&A on vitamin D

If you'd like to do some research into Vitamin D and whether or not you think it would be of benefit to you, these articles are a good place to start. It was recommend to me that I should try and get out in the sunshine when I can (with due concern given to not damaging my skin) and also to take a supplement. Naturally, your GP would be the best person to similarly advise you.

Some D-licious foods
(it would seem taking a supplement does nothing for your joke writing skills)

My MS Profile

My Current MS Profile

Name:

Eddie

Age:

33

Diagnosis:

Multiple Sclerosis (diagnosed June 2011)

MS Sub-type:

Unknown

Current Treatments & Therapies: 

Interferon beta-1b (self-injection, every other day)

Gabapentin for neuropathic pain relief

Paracetemol for general pain relief

Vitamin D supplement

A new course of physiotherapy three times per week

This is me being 'fatigued' in bed. Honest !

Having detailed my journey from initial symptoms to my diagnosis, quite a few people have been asking how I am now, some 18 months after I first developed symptoms. 

Well, I'm pleased to say that in many respects I do feel a lot better. Some things, such as balance, still don't feel quite right, but they're a long way from where they were when I first got ill. 

My symptoms, however, have changed, and the two predominant ones I have now are pain and fatigue. 

I've been pondering over this for some time, because those two short words don't even begin to encapsulate what both of those symptoms entail, even if I write them in bold, and even if I write them in (gasps!) bold italics ... capitalised!

PAIN & FATIGUE

Nope. Doesn't even come close! It somehow feels as if the words do a disservice by completely understating the effect these symptoms can have on your quality of life. That being said, they both warrant posts of their own, so very soon I will write specific posts on these symptoms, and others, in the detail that they require to express what they are, and what effect they can have on your life. 

However, I am pleased to report that in many ways I am feeling well. I'm trying to keep myself busy and work within my current capabilities as I continue to improve, which can be a challenge, as if there's a day when I'm feeling particularly well I can have a tendency to go a bit nuts and then pay for it in the coming days or even weeks. 

I've committed to a couple of projects that I can fit into small parcels of time. These are:

1) Losing weight (I would like to get down to 17 stone from 19)

2) Learning Romanian (I've apportioned 20 mins a day)

3) Reading and writing more (still difficult for me due to fatigue)

There. I've put it in writing. I'm doing those three things. Slowly and surely. But I've put it out there now and there's no going back! Feel free to ask me in a month's time how I'm doing with those projects, although if I've bailed on all them, expect the bitter retort 'I've got MS, dammit! Give me a break!'. Just kidding. Maybe : o )  

(Serious voice) This picture illustrates pain. As for why, you will have you wait until my cheerful post on pain itself, won't you?

Montel Williams Interview on Larry King

Montel Tells

When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.

One of my favourites is the interview on Larry King Live of Montel Williams. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.

An example of this is the injection I take every other day. I hate taking my injection. I hate it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.

Videos are in sequence from top to bottom. I hope you enjoy : o )

My Story

Background Check

A photo I accidentally took once while 'working a case'
It's completely irrelevant, but I like it!

For those that don’t know me, I would like to introduce myself, give a little of my background and explain how I came to be writing a blog called Multiple Stupidness.

My name is Eddie, I'm 33, born in Ireland to English parents and (since I was three) brought up in the UK. Due to this, I feel quite closely connected to both countries and throughout my blog I will reference information and articles that I think will be of particular interest to both Irish and British readers.

At the tender age of 22 I married the most beautiful, caring and hard-working woman I've ever known, and in 2008 we were wonderfully blessed with our first child, a stunningly beautiful little girl (yes, I'm biased - get over it!).

For over ten years, I’ve worked as a professional investigator, variously investigating fraud, tracing missing and absconding persons and assisting with the gathering of intelligence on behalf of the legal professional and other bodies. For the majority of this time, I operated my own business, but since 2010 I was employed as a Field Investigator (that’s someone that works ‘in the field’ rather than an office, as opposed to someone that investigates fields of the green or wheat variety … I resisted the temptation to employ any lame jokes about me being ‘outstanding in my field’ and I suggest that you should too). It was an interesting and challenging career, and I have many fond memories of it that are not for this blog!

Apart from being mildly asthmatic (another stupid disease), I’ve been fortunate throughout my life never to have had any significant health problems prior to this. My interests include writing, reading, music (I play the piano and bongos … yes! bongos count!) and languages. So … that’s me … kind of.

So How is I at Where I's at? 

Me (far left) with my wife and daughter in December 2011
(for clarity, any picture of me with a beard is post diagnosis!)

In April 2011, on a very ordinary Saturday, my wife and I had planned to spend the morning out with our daughter.  On getting up, however, I felt somewhat ‘spaced,’ as if the world around me was floating somehow in my senses, and I had problems balancing. I bowed out of our morning’s excursion and settled down to watch TV on the couch. I had been working exceptionally hard for the preceding months, and I put it down to being fatigued, and had few complaints about the prospect of a morning in by myself, lounging in front of the TV watching The Office and Frasier.

On the Sunday, I didn’t feel any better. It was very hard to actually define what I felt – it wasn’t dizziness, nothing was spinning, I didn’t feel sick … and yet I couldn’t balance properly and the world still had a strange ethereal quality. I remember playing outside my daughter, shrugging off the symptoms as best I could, and scooping her up from the ground and lifting her into the air. As I did this, I was overcome with a very strong and sudden sense of losing my balance, and it caused me to stumble. This was the first point where I remember thinking: “Wow … something really is wrong.”

Monday passed with no change, and on Tuesday I gave in and went to see my doctor (something both the Irish and British mentality has always caused me to avoid … real men don’t go to the doctor’s lightly, and certainly not because they’re feeling a bit floaty in the head!).

My GP was very kind. I felt rather silly explaining my symptoms, particularly as they were so non-descript and I was clearly able to walk unaided into the surgery. However, he gave me a full examination, listened to me, and finally said (very honestly I thought): “To be truthful, I just don’t know what this is.”

He explained that the symptoms I was describing could be caused by any number of conditions, but it sounded as if it might be a condition called labyrinthitis, which is damage caused to the inner ear normally by some infection. He prescribed me anti-vertigo medication and signed me off for the week, and off home I went. Still no undue concern, and to be truthful I was quite pleased with the prospect of a week off work, as my recent schedule had been punishing. When I went home and researched labyrinthitis, a bizarre condition causing balance problems and giving the world a dream-like, unreal tint, I was convinced: that was exactly what I was experiencing.

My week off extended to two weeks, then a month, and then it turned into months. Rather than getting better, things got worse. My balance deteriorated to the point that I could not walk unaided – either by leaning upon something or (most demeaningly) holding my wife’s hand or shoulder if we went out. There was a marked decline in my memory and cognition – sometimes I couldn’t even remember what day it was. I would lose track of my thoughts mid-sentence, and I would try and recall something only to find (and it was very frightening) that the memory was just gone, nothing, just an empty space inside my head. I couldn’t follow the plot of films, conversations would exhaust me and confuse me, and I even stopped being able to read. I didn’t lose the ability to understand the words, but stringing them together into a coherent concept seemed simply beyond me. I also developed more physical symptoms. My lips would start tingling, as would my tongue and fingertips, and my left hand would at times stop working – I was unable to accurately control the movement of my fingers. For someone that can type and play the piano, for someone who had always had a good memory and clear, fluid recall of words and concepts, these sensations and symptoms were very disturbing, and I felt like a stranger in my own body.

Without a doubt, this was a pretty miserable time for me and my wife. It seemed that with one single stroke, everything I enjoyed doing was taken away. I couldn’t play the piano, I couldn’t type, and I couldn’t even read a magazine article. The sports I enjoyed were definitely out, and even the hum of the Xbox 360 (previously a frequent sound in my house!) stopped. I spent a lot of this time on the couch - distressed, frustrated and bored.

During all of this, I was still fairly convinced (and being treated as if) I had labyrinthitis. Moments of fear did creep in, though. I had bad reactions to the medication I was on. It caused insomnia, vivid and terrifying nightmares, and panic attacks. During this time, there was a growing sense that perhaps more was wrong than we knew. I remember one night waking from a nightmare, in a panic because I was convinced someone was in our garden, and jumping out of bed to confront this “intruder”. As I did, I stumbled because of my balance and nearly fell. I was struck by how pathetic this was. I slumped onto the bed, crying and sobbing. I’m a big guy – 6ft 6in and 19 stone – and here I was chasing phantoms in the night, and not even able to stand properly to confront them. My wife was immediately at my side with her arms around me. “What is wrong with me?” I kept saying, over and over, sobbing and shaking. “We’re going back to the doctor’s tomorrow,” she said with absolute resolution. “We’re going to find out what is wrong.”

Thus began what felt like a long and frustrating haul through the medical system. I changed GP and was sent for an ENT examination. I was given various tests and a CAT scan, none of which found anything conclusive. I was examined by a neurologist, who concluded (quite definitely) that this was neither labyrinthitis nor a neurological problem. I had been on a priority MRI scan list, but was then taken off. I was told I would need to wait for the next MRI appointment (now a non-priority) and this would take about nine months.

At this point, my wife and I decided to make a private appointment with an ENT surgeon (at this point, I was still clinging to the idea that this was something to do with my ears). This man was a game changer, a wonderful man. He gave me a full examination, spent time listening to my symptoms, and then sat down with my wife and I.

“This is not labyrinthitis,” he said. “We need to get you an emergency MRI scan.”

I could sense he wasn’t saying something, so I asked him what he thought it might be.

“I would rather not discuss what it may or may not be. There are some things we need to eliminate from the investigation.”

“I want to know,” I said.

“OK. From your age and the symptoms I’ve observed, I think that this might be the onset of Multiple Sclerosis. This is what we need to eliminate.”

“OK,” I said. “Thank you. I appreciate that.”

Despite what was a calm response, inside I was deeply frightened. This was the first time there had even been mention of multiple sclerosis. Multiple Sclerosis? I knew absolutely nothing about it, except that it was bad and made me think of wheelchairs. The only person I knew of with MS was Debbie Purdy, the “right-to-die” campaigner. I had seen her on Sky News a matter of weeks before, and I remember thinking flippantly: “God … can you imagine if it turned out to be that?”

As we left the surgeon’s offices, he warned me with a wry smile not to go looking stuff up on the internet – as if a warning like that ever works! I became an overnight “expert” in MS. My reading was improving, so I was able to siphon small portions of articles from the web and read them gradually. I still had no diagnosis, but I remember thinking on many occasions: “Wow! MS! Give me anything but this disease.” I started to develop rather rosy feelings of nostalgia toward the time when I had labyrinthitis … that word still has a warm feeling for me … safe, dreamlike, otherworldly, but most of all curable labyrinthitis (I sigh wistfully!).

The pace of things started to really pick up from this point. The ENT surgeon got me back on the priority MRI list, and I had this scan quite quickly. For some odd reason, I was referred back to the public ENT (rather than neurology) to collect my scan results. I remember a young doctor, poring over a radiographer’s report that he clearly didn’t understand, mumbling that he didn’t know why I was here in ENT. I looked over his shoulder and, in my newfound expertise, saw the words I was praying would not be in the report: demyelinating plaques. I turned to my wife and said to her: “Yup. I’ve got MS.”

This isn't my scan, but the white spots are the same demyelinating

plaques that were discovered in mine. Having a neurologist point out

and count areas of damage in your own brain is a definite "hit home" moment

Of course, the process of diagnosing MS is not quite as simple as I was making out, and I was referred back to neurology on the basis of this report. I was seen and examined again by the neurologist who had previously stated this was not a neurological problem, but this time he confirmed that the symptoms I was experiencing corresponded to the areas of damage in my brain. Despite a gnawing grudge I felt toward him for earlier clearing me, I have to say he was an exceptionally nice man. At one point, while he was explaining the MRI report, my wife started crying, and he stood up from his chair and gave her a hug. It was a bizarre situation that still makes me smile now. Here I was, sitting in his office, having just been told (and from an actual expert, rather than my own self-appointed punditry) that yes, this all seems to be adding up toward MS, and he and my wife were standing, embraced, and I was sitting on my own, like Billy-no-Mates, thinking: “Hang on … why isn’t anyone talking to or hugging me?! I’m the one that’s just been told this!”

More tests and examinations followed. Balance test, eye tests, prick tests (that’s with a pin, for goodness sake), plus the horrible ‘tickle test’. You know that one’s coming when the doctor asks you to take your shoes and socks off. I really hate that one. One time, while I was in the examination room with just the neurologist and a nurse, he tickled my feet with his keys (it’s always keys for some reason) and I got an uncontrollable fit of the giggles. Imagine it for a second: a 6ft 6in, 19 stone half-naked oaf lying on an examination table, looking down the barrel of an MS diagnosis, and he’s giggling like a baby, all because a doctor just ran a car key across the sole of his foot. It would have been less embarrassing had the doctor or nurse at least made some acknowledgement of my uncontrolled mirth, but no: they didn’t even crack a smile as I continued to giggle, titter, snort and wipe the tears away from my eyes.

During these tests, I was kept in hospital for the first time. I was also given a lumbar puncture – a rather frightful test where they draw out spinal fluid with a needle for testing. It was another humbling and rather pathetic moment. I had to lie on a bed, in the foetal position, so that my vertebrae were accessible to the doctor and his needle. I was frightened. My wife sat with me, holding my hand, and under strict instructions by me not to wince, grimace or gasp when she either saw the needle for the first time or saw them putting it into my back. It amazes me how, during these times, we need these childish comforts so much. A grown man, a private investigator, used to working in a challenging environment, with ex-soldiers and police as colleagues, and here I was, needing the comfort of having my hand held. I have to say, especially to anyone that needs to have this routine performed, it wasn’t as bad as I was expecting. It wasn’t pleasant by any means, but when is someone drawing cerebrospinal fluid from your spine with a needle ever going to be pleasant? It hurt, but not unbearably so. The pain was akin to the gnawing ache a man feels after he’s caught a well-struck football with his testicles, but with that pain being relocated to the small of your back. It was done, I got through it, and anyone out there who needs to have this done will get through it as well.

The following morning, the head neurologist came to see me with a nurse and two other doctors in tow. My wife hadn’t yet arrived in, so he spoke to me on my own. I sat cross legged on my bed and he sat on the edge of it. It was obvious he was in to tell me something. He said, in a very quiet and kind voice, that the evidence from the various tests was compelling (even though the results of the lumber puncture weren’t in) and that he believed I was having the first attack of multiple sclerosis.

Unlike with the ENT surgeon, there was less restraint on my part this time, and less of the old British stiff upper lip showed through. As he said it, I choked a single sob before putting my fist to my mouth and catching myself. There was always a part of me that didn’t believe it was MS, that it couldn’t be MS, and to hear the head neurologist say ‘Look, we don’t even need the results of the final test’ was quite shocking. He paused, I was able to compose myself, and then he explained I would be kept in hospital over the coming days to have a course of steroids administered to reduce inflammation in my brain.

Thus, from that point we arrive at today, almost a year and half later. I’m still not working (I was subsequently laid off for medical reasons by my employer), and my symptoms have changed and evolved. By and large, I’m better than I was back then. My balance is much better, although I still don’t feel completely right. However, fatigue and pain has been very difficult to deal with. I take a betaferon injection every second day, as well as regular paracetamol and painkillers and some other optional supplements. I had been on anti-depressants, largely to regulate my sleep patterns which had become very erratic, but recently chose to come off those. I also recently started physiotherapy, which I’m hopeful will reduce both the pain and fatigue.

I still don’t know how much it has sunk in yet – when I feel well, I still sometimes find myself doubting the diagnosis. When I feel bad however, either very “MSey” (I will try and define this in another post) or in a lot of pain, the weight of this diagnosis can be very heavy indeed, and many factors such as loss of a feeling of control in my life, loss of my identity and loss of my social life (to name a few) can weigh very heavily upon me.

I am, however, generally positive about my future and about the life changes that have been forced upon me. I try and view this diagnosis as a new beginning. My career, for example, was very special to me, and was part of my identity. I enjoyed the work, the excitement, the mental challenges it gave me, and I liked the status, if you like, of being a private investigator (and a good one, if I may toot my own horn). However, it came at a cost. The work/life balance was hard to maintain, and it could be physically and mentally exhausting, and it was a difficult line of work for a family man, as I had become. So this can be a new beginning for me. I’m confident I will work again, but in a new field that will give me new challenges and new enjoyment. As it will need to something that is manageable for someone with MS, I’m confident that it will also be something more manageable for someone with a family. I have a few ideas, but my concentration right now is on improving my health and getting back to as well as I can be.

I will write more specific articles in the days and weeks to come (shorter ones, you might be glad to know!), detailing my symptoms more in depth, my experience of adjusting to this new me, and of course various articles and references that should be of interest.

If you got all the way through this post, thank you for reading! I really do appreciate it, whatever your interest in MS or my blog might be.

My wife’s just brought me a cup of tea and a muffin, so I believe it’s time for a little break.

Thank you again.

Eddie

Regardless of how the past year has been, or what the future holds,
 I know for a certainty that the next five minutes is going to be heavenly

What is Multiple Sclerosis?

Look at the myelin sheath, getting all rubbish and damaged

It wouldn’t be much of a blog about MS if I didn’t explain what it is. After all, until the evening after a consultant said to me “I think this might be MS,” I had no idea either.

MS is a disease of the brain and spinal cord (the central nervous system, or CNS). The CNS is responsible for conducting electrical signals to the various parts of the body. The nerves in the CNS are insulated by a fatty substance called the myelin sheath, often likened to the flex on an electrical cord. In MS, this sheath is damaged, and the nerves become less efficient at conducting the signals, or even fail to conduct them at all, thus resulting in the various symptoms of MS.

Common symptoms include problems with:

• Bladder and bowel function
• Muscles, spasms and stiffness
• Mood, depression and emotions
• Memory and cognition
• Vision
• Speech and swallowing
• Sexual function
• Pain and sensory disturbance
• Fatigue
• Tremors
• Balance

      MS is notoriously unpredictable and symptoms vary considerably from person to person. Some symptoms are immediately obvious to others (problems with speech or mobility, for example), while other symptoms (such as pain and fatigue) are hidden symptoms that can difficult for both observers to understand and for sufferers to explain.

What causes MS?

This is one of medicine's biggest mysteries. Theories include: 

• A virus, whether an unknown one or a reaction to a common one.
• An immune reaction, in which the body's own immune system attacks and erodes the myelin sheath.
• A combination of the above and/or other factors.

Who will get MS?

This is impossible to predict. However, some patterns have been observed.

• Young adults. Symptoms usually appear between the age of 20 and 40. Therefore, MS has the rather cruel reputation of striking people in their prime and most productive years.
• Women are twice as likely to develop MS as men.
• Temperate zones. MS occurrence is higher the further away you move from the equator. This bodes ill for Britain and Ireland. 
• Sanitation. There is evidence that MS is more common in parts of the world with higher standards of sanitation.

What is MS not?

• MS is not a mental illness.
• MS is not contagious.
• MS is not curable or preventable (yet!)
• MS is not ME, M&S or Eminem
• MS is not a barrel of laughs

Why should you care?

What a callous question! Well, seeing as you asked ...

• Over 2,000,0000 people worldwide have MS, including some 400,000 in the US, 70,000 in Britain and 8,000 in the Republic of Ireland
• Families of people with MS share the emotional, practical and financial burden of the disease
• Every year, millions of euros are spend on research, treatment and support services related to MS. The total bill including lost productivity and social welfare costs is incalculable. 
• Due to the insidious and often invisible nature of MS symptoms, it is generally poorly understood by those who have had no direct experience of it. 
• It is one of the most common neurological diseases among young people in the world.

     

Although there is still no cure for MS, treatment is advancing all the time and there are various treatment options available, currently focused on managing symptoms, slowing the progression of the diseases and maintaining quality of life.

Hopefully, this has given you a crash course into the basics of the disease. I will post links to great sites with really good information (particularly the MS Society and MS Ireland) and will post further articles on more specific subject soon.