Archive for the ‘medical’ Category
I think it’s time for another annual update, though I doubt that this one will be shorter than the last. The “shock of the new” has worn off, somewhat, and there have been fewer surprises. It hasn’t been a boring year, however.
The second year at University College Dublin (UCD) did not go quite as well as the first, but I’m still on track for a solid 2.1 degree, a.k.a. “Second Class Honours, Grade I” in B.Sc Structural Engineering with Architecture. A “First” is a little beyond me, since it requires excellent results on all subjects, and I don’t see that happening. In some subjects – not all – I’m running in to problems with the teaching and assessment methods.
My grade point average (GPA) was dragged down by two subjects in the second semester: in one, Theory of Structures, I enjoyed the lectures very much, and did well in tutorials etc., but when it came to the exam, I found that I could not remember every procedure and every formula. So much of it was empirical in nature, derived from experiment and not from first principles, so there was nothing “behind” most formulae for me to hang on to.
In another subject, Statistics, the problem was that the lecturing was frankly poor, with the lecturer often late and wasting time on silly things. He seemed to expect the students to be computers, remembering random pieces of information from his and other subjects. When no-one gave an instant answer to an integration problem (from calculus), the result was a 20-minute rant on how we were not trying hard enough. As if that was not bad enough, I found that Statistics affected me like no other subject ever has: an overwhelming, enervating, sense of “I don’t care”. I know that some of it is relevant to my future – I was already aware of some parts – but I could not help thinking that most of it was not, and I may never see any of it ever again.
In particular, I’m getting more frustrated with examinations. For most courses in my programme, I think it does not make sense to have the whole course depend on what I can cram in to my head and regurgitate on to paper, by hand, in a room filled with students, in a two-hour period. You end up studying to pass the exam, not to further your understanding of the subject – though you would expect those two goals to overlap. The degree to which this applied depended on the subject, an in one subject in particular, there was no exam, and the entire course was based on continuous assessment, i.e. assignments.
If this was happening in every subject, I would start to suspect that the problems lay primarily with me, but a few other subjects showed me just how good it can be. In Mechanics of Solids, the lecturer was excellent, focusing primarily on actual problems and not on abstract theory. The assignments were challenging but doable, and the exam fell in to place nicely, leaving me with a solid A-.
In my past work experience, the standard of work we had to produce meant that it was always necessary to check sources, and use whatever resources and tools were available to us, and not try to do it all from our heads with pen and paper. I do not expect my future to be much different: rather than using my head to store information, it will be used to process information in to knowledge, and (hopefully) wisdom. I thought about drawing a “wisdom pyramid” to illustrate what I mean, but a quick internet search shows that many are thinking along the same lines. The diagram to the right is courtesy of the Institute for Innovation & Information Productivity (IIIP).
At this stage in my degree programme, UCD seems to be expecting me to operate at the lower levels, wasting energy that could be better spent on a deeper understanding of the subject. It looks as if I that will have to wait for the Master’s years – if I can afford them.
The only thing to report on this front is that I’ve passed the end of the two year trial of FTY720, and am now on the extension phase of the trial. In this phase, I’m definitely on the drug – no more placebos – but I’m not being told what the actual dose is. I should soon be told what I was on in the first two years of the trial.
With multiple sclerosis (MS), the symptoms can be highly variable, and dependent on factors other than the MS itself. It changes how your body reacts to certain stimuli and situations; for example, I have been warned against extreme heat, a warning I definitely violated this past summer (which I will say more about later). In general, though, I can consider the situation well under control.
There are certain constants in my case: the L’Hermitte’s Sign in my neck can be considered a marker of permanent spinal cord damage: I can not bend my head forward without tingles shooting down to my feet. The severity varies: it’s worse when I am tired, but also first thing in the morning, after my spine stretches during sleep.
Some things vary, such as my memory performance, which partly let me down during the last university exams. I do experience fatigue, but it doesn’t just happen: I don’t get tired if I don’t do anything, but when I do things, I get more tired than I used to, and more quickly. I can still walk miles a day, but I feel the effects more. Still, this is turning out to be a very manageable condition.
After a few attempts at finding work, I could see that the employment situation here in Ireland is such that I need not bother. Where there are openings, they are being bombarded with applications, with the result that you need to be a perfect match to the position, complete with plenty of relevant experience. (I saw reports of a thousand applications being received for one simple temporary teaching post.) At this in-between stage in my study, with only summers free, I am not a fit to any job at all.
May was largely taken up by university exams; June by preparations to move house – again – and the move itself. My new place is closer to the university in general, and much closer to the parts of the university I will be visiting the most, specifically the Civil Engineering department. July was a quiet month of settling in, with several hospital visits associated with switch to the FTY720 extension trial. Finally, August arrived.
On the last day of July I flew to Houston, Texas, to visit old friends of mine, staying in their house about 50km north for four weeks. The daytime temperatures rarely went below 30°C, usually exceeding 35°C, which explains why everything is air-conditioned. I think the kids were pleased to see me: there are photos of me, on the couch, with all three of them on top of me (a classic dogpile). We visited Johnson Space Centre, including Mission Control, had a good steak dinner, and even got to go to a baseball game. (The Houston Astros beat the Florida Marlins 4-1.)
My interests in architecture and cities meant that I really wanted to see downtown Houston too, which took some doing. My friends live in a different county, out where the Houston Metro buses don’t run, so the best way to do it was to travel to my friend’s office, which was closer, and get the buses from there. The service was surprisingly good: the buses weren’t that regular, but they did run to schedule, so you could plan the trip. best of all: a trip costs just $1.25, including a free 2-hour transfer if you use a smart card, which I did.
The scale of Houston made it slightly daunting to someone on foot, in that heat, but after a little research and familiarization, I found Houston scored highly on my “friendly city” criteria: you could tell where you were and where you were going, things worked as advertised, and it was possible to leave the map in the pocket and navigate by intelligent guesswork. The downtown area features a network of tunnels linking the various buildings, complete with coffee shops and restaurants; these cater to office workers, mostly closing by 3PM. Up on the street, though, the locals suffering the heat presented the other side of Houston: largely Hispanic or African-American, and clearly impoverished, some apparently refugees from New Orleans.
One pleasant surprise: it was possible to walk straight in to the tallest building in Houston, the Chase Tower, and take an elevator to the Sky Lobby on the 60th floor: no cost, no formalities of any sort, just an elevator that makes your ears pop. I also paid a visit to the Museum of Fine Art, wandered through a wall-to-wall Who’s Who of Impressionism, and found myself standing in a room holding seven Picasso pieces. The place was nearly empty, even though it was Free Thursday.
Back in Dublin, I’m preparing to start university again on Monday, though I’ve already been back there several times. I’m involved with the Mature Student Society there, and helped out on the orientation day last weekend, giving a short speech about my experiences and motivations. I still find it easier to speak in public than in private, for some strange reason.
The Asus eee PC 1000 is still going strong, running the Ubuntu Linux Netbook Remix. It survived the trip to the USA with flying colours, and over the last year, about the only problems it’s experienced have been those I caused myself. In the university library it’s kept me typing for over five hours at a stretch.
My Houston friends gave me a parting gift, in the form of an Apple iPod Touch (8GB). I wouldn’t normally buy any Apple products, due to their corporate policies (DRM, lock-in, the walled garden, etc.), but this is turning out to be extremely interesting. It’s a very good MP3 player, but I didn’t know it had wireless networking, email capability, and more. It’s basically an iPhone without the phone, which coincides nicely with my current plans to cancel my current mobile phone account. (I’ve been overcharged by my current provider, and I’ve had enough.)
The applications are also very interesting. For example, I’ve found a version of the Ilium eWallet software I’ve used for years, for storing passwords and other sensitive information. There’s also a version of Skype, as well as some interesting games, such as Jelly Car and iMafia III. It’s only been about ten days at this time, so I’m still getting used to the iPod.
Another year, another birthday, another 60 credits, another step closer to … what? I ended the previous annual report with a hope that the world wouldn’t fall apart under my feet, and look at what happened. I was expecting a housing market crash, but I was not expecting such a monumental balls-up. Never mind sub-prime mortgages, I had much more to learn about insurance, derivatives, and the dreaded Credit Default Swap. Still, it could be worse: I seem to have picked a good time to be absent from the job market and living a low-income, low-expenditure lifestyle. I’m having health checks and receiving MS therapy at no cost to me, and I even had enough slack, financially, to afford a trip to the USA, so I have to say that life is pretty good. I think it’s time to put this report to bed, and follow it there. Until next year, good night.
No, it’s not real: the Gematriculator is a spoof Numerology analyser for web pages or text. Well, if this says good things about the site, I can’t take much of the credit: it’s analysing the underlying HTML code too, and most of that is generated by wordpress.com and the Theme I use.
My two years of pill-popping have started: so far I have three bottles of capsules from America, complete with Federal warning labels, each with about a month’s supply of… a lot, a little, or nothing. The capsules are the smallest I’ve ever seen, so small it’s hard to imagine anyone having trouble taking them. Since I have to take one a day, I’ve set up alarm reminders, which means I won’t be forgetting to take my vitamins, either.
I spent most of the day just sitting around, and was able to write a few thousand words of… well, that’s for another day. There was no internet access, so no normal work was possible, but I could take coffee breaks. The worst parts of yesterday’s hospital visit were the ECG exams. (Electrocardiogram, also known as EKG.) I had one in the morning, before the first dose of medicine, and another later in the evening.
If you know about the ECG, you might be asking: what’s the problem? It’s quick, non-invasive, and all you need to do is lie still. Well, all that is true, but in my case the problem is preparation. I’m male, so I don’t get the luxury of modesty: I’m lying on a trolley with my shirt off, while everyone and their sister walks past, or pokes their noses in to say Hi! to the nurse. A pretty female nurse, who has to repeatedly reattach electrodes that refuse to stick to my hairy chest. It took alcohol swabs, surgical tape, and a threat to break out the razor and shaving cream, before they held still long enough for a minute’s data.
What I said before about being patient number one turned out to be untrue: I was the first going in, true, but the last going out with a bottle of pills. Well, not quite the last, because I made a new friend yesterday: Cathy, who stayed a little longer than me, and whom I will hopefully see again, on my next visit in two weeks’ time. After the first hour, during which we both failed to present any symptoms whatsoever, we went out for lunch. We also hung out during the day – but not while she was having her ECG: she, at least, got to enjoy a little modesty.
Since I moved to Ireland, just in time for the Millennium celebrations, I haven’t quite settled here. I’ve considered my move temporary, one that might be reversed at any time. I have even kept a couple of UK credit card accounts open, with small credit balances costing me nothing, in case I moved back there.
I must write and close those accounts: this year, for the first time since moving to Ireland, I’m making a commitment of sorts to living here. More than one commitment, actually: at the beginning of September I will be starting a three-year university course, but this week I start a two-year drug trial. Neither of these commitments are irrevocably tied to Ireland, strictly speaking, since they could be continued in another country, but such a move is not in my plans.
The FTY720 (fingolimod) drug trial is a go; the drug company (Novartis) thinks I’m a match, but asked me back for an additional MRI last Friday, since they thought too much time had elapsed since the last one. That takes my tally of spins in Tesla’s tumble-dryer up to four. This time I asked for extra padding behind my head, which made the experience much less painful than before.
The first dose of the drug (real or placebo) will be this coming Thursday: a day of mostly sitting around, so I’ll have the Tablet PC with me. If there’s an Internet connection, I may be able to get some office work done: if not, I have offline writing I can do more on, and I’ll carry a book or two.
I’ve been warned that there’s a small chance that I will be admitted to hospital as a patient, so I can be observed overnight: I suppose that depends on how many beds are free, in one of the biggest and busiest hospitals in Ireland. The chances of this happening will be increased for the same reason I’ve experienced delays and repeat tests: in this current study I am patient number one, the one they are testing all the procedures on.
If I survive that I have a detailed two-year schedule to follow, currently on paper with dates that I need to enter in to my work computer. From there it will be synchronised to my phone, so that I’ll be reminded. Twelve medical examinations will include six eye scans (OCTs), six lung tests (PFTs), and three more MRI scans.
Hey, it could be worse… I could be paying for all this.
The screening process, for the FTY720 (fingolimod) drug trial I’ve applied for, has started. It’s not off to a good start: after being told that I had to take a whole day off work, then arranging a day off work, I went in to the Neurology department at St. Vincent’s University Hospital the day before to sign the papers and have a last chat with The Professor. The schedule for the next day, last Thursday? A MRI scan, a chest CT scan, and… that was it. The whole day off is going to come later, with another half-day of eye scans before that, and it might not be a whole day after all. Business as usual in Ireland, then.
It was the first time I’d ever had a CT (CAT) scan), or even seen a modern machine, and it was as quick, painless and cheerful a procedure as one could wish for. The machine itself wasn’t even the “tunnel” I’d seen pictures of, but more of a “ring”, like something out of 50s science fiction. Three minutes and a massive dose of X-Rays later, I was done, without even taking my shoes off.
That was a relief after the MRI, a procedure I’ve undergone twice before, and hardly enjoyed either time. It’s not painful, at least not directly, but halfway through I was brought out for an injection of gadolinium, which enhances the contrast. They were comparing scans from before and after the injection, so I was implored to keep my head still, in an uncomfortable position, for over half an hour in total, including the part where I was injected with a heavy metal.
My head was locked in place anyway, with pads at the sides ensuring that the earplugs did not fit snugly. There is no movement visible from inside the machine’s claustrophobic confines, but I was left under no illusion that huge superconducting magnets were flying around, inches from my nose, with enough liquid helium to turn me into a meat popsicle in seconds. The noise… it was as if HAL9000, Metallica and the Aphex Twin had co-designed a nuclear-powered washing machine that went up to 11.
Did I complain? Well, I am British, and it’s not as if my situation was worse than that of anyone else who needs to lie in a powerful magnetic field and have their protons resonated by a powerful radio transmitter. Never mind that I’ll be back in there every six months for the next two years, at least, and I suspect radiologists might have long memories. Zap.
Today saw the first time, since I was diagnosed with multiple sclerosis, that I had the chance to discuss my condition with specialists on the condition. After being told that I had MS back in January 2006, I walked out of my neurologist’s office, went home, and heard nothing for over a year. This despite being told that I would be contacted by a MS specialist nurse to discuss treatment options, and that I would be scheduled for follow-up exams. Some one dropped the ball on that one.
Of course, I was in no hurry to go looking for more medical treatment; I was just getting on with life, and work, without any significant disability. I described my symptoms as “annoying”, and no real problem to live with. After my business/vacation trip to the USA in March, however, I was hit by a combination of symptoms that left me feeling I’d aged fifty years while coming down with the flu. I bounced back after about ten days, most of it working from home. It looked suspiciously like a MS relapse, thus confirming the diagnosis, so I called up the hospital, who scheduled me for the MS Review clinic I had heard about.
The first order of business today was to confirm that what happened last month; was it a MS relapse or not? The consensus was that it was; the fatigue and loss of motor control were classic signs. The way I’d recovered so quickly was odd to me, but not to the specialists, who were quite used to it.
The hospital I go to, St. Vincent’s in South Dublin, is affiliated with the nearby University College Dublin, where they are doing research into MS, so you can probably guess what happened next: they wanted my blood, and a lot of it. Ten 5ml vials in total, going to various places, for various forms of analysis; the usual general health screens, plus some extra tests, including DNA sequencing.
So I’m back on the track regarding MS treatment, and I have some options for treatment. At the time of my initial diagnosis, my neurologist and I agreed that I did not need to start any treatment at that time. Now that I’ve had a relapse, the picture is different, and it’s time to start thinking about future relapses, and how drugs can reduce their frequency and ameliorate their severity. (Do I get bonus points for finding a use for the ten-dollar word ameliorate?)
The most interesting treatment option, by far, is an invitation to join the Phase III double-blind trial of an upcoming MS therapy called FTY720. Some details about the drug and its current status can be found at the following link. This is the last phase of trials, designed to generate the data that the manufacturer needs before they can submit the drug for approval.
The “unique selling point” for this drug is that it’s the first made-for-MS treatment that comes in capsule form, to be taken orally; all the other current therapies are administered by injection. That would not be a show-stopper for me, I suppose, but their efficacy in reducing the incidence of relapses – about 30% – means that I’d think carefully before accepting such a treatment regime. I’d have to start one of those straight away, and it would take years of injections before anyone could say whether it’s doing me any good.
So, I think I will volunteer for the FTY720 trial. Not only do I have an interest in furthering research and helping it to market; I have the luxury of a mild MS condition that means I can experiment with treatments. The double-blind nature of the trial means that I could conceivably be given a placebo, and effectively have no treatment for the two-year duration of the trial. I can afford to take that risk.
… and I ain’t got much of it. It’s Friday evening, and I’m testing my ability to write and post a full blog entry without using the keyboard at all.
To do the bulk of the writing, I’m using a program called Dasher, which lets you select characters and words by controlling a cursor. When you select a character, that affects the following selections, which seem to unfold in an organic manner. It’s context sensitive, and allows me to enter text very quickly with a minimum of practice. For editing I have an on-screen virtual keyboard, and the rest is done in Firefox.
Sounds like fun, and it’s not the first time I’ve tried this, but today it’s a little more serious. Sometime on Monday this week, my body decided to remind me that I was diagnosed with Multiple Sclerosis just over a year ago, and to disabuse me of the notion that my neurologist might have read the MRI films incorrectly. I was at work on Tuesday, thinking I might have caught the Flu on the plane from Denver, but when I tried to sign a form, and could barely hold the pen, my situation needed a rethink.
The main symptoms are fatigue and some loss of fine motor control, which go together. I worked from home today, and did a fair amount of typing, but by the end of the day it was a struggle to lift my hands to type, and my fingers would not hit keys on demand.
It’s a good thing I’ve made a few preparations, I suppose. I belong to a virtual team at work, with the ability to get work done from remote locations, and the main obstacles to working from home on a regular basis are more procedural than technical, with regulations about ergonomics getting in the way.
So I will still have to go in to the office, but not for a few days yet. One particularly nasty MS symptom hit me on Thursday night; a massive cramp has has left me with a torn calf muscle that has me hobbling around like an extra from a low budget Dickens production. Just to add injury to insult, you know.
Now my wrist is getting sore, and I’ve done enough whining for one day. If it wasn’t for the physical problems I would be fine, actually, and I know I’ll be better in a few days. I will NOT start using txtspk, with Dasher making it easier to use good English than bad. I just need to take it easy for a bit.
In the absence of any real incident, how about a little “traditional blogging”; what I did on my Saturday:
- Woke up, fell out of bed, dragged a comb across my head… nah. My hair’s too short to need a comb;
- Hung around the flat all morning; I have the place to myself for about two weeks, my flatmate having departed for British Columbia early this morning;
- Wrote a bit about Rush for MuseWiki, to replace the one-liner. Black Holes and Revelations is still sounding great.
- Headed in to Dublin city centre: first stop the opticians, to pick up my new specs. They’re a more conventional shape than I’m used to, since the optician advised me to go for smaller lenses. Having such bad eyes means that I’ve never been able to take advantage of any special offers, because of high refractive index lenses, never mind the light-sensitive and anti-reflective coatings. There is some good news: my suspicions were correct, and my eyes have improved since the last test, my left eye by a whole diopter.
- Bought more cheap trousers, but left shoes for another day. I walk 32 kilometres (20 miles) in an average week, not including weekends, and it takes its toll on clothes. Thank goodness for outlet stores.
- Tonight I’m watching a “greatest movies” countdown on Channel 4, noting that I have yet to see most of them; the VCR will be recording one that should be on the list but probably isn’t: Being There.
It’s been a while since I’ve had anything to say about Multiple Sclerosis, mostly because nothing has been happening on that front. There’s a small chance that I’ve been misdiagnosed, but I know that that the MRI results and the symptoms I have still point that way. The only other known cause for nerve damage of this type – pernicious anaemia – was ruled out by blood tests.
What I have is best classed as “benign” MS, and while the symptoms continue to fall into the “annoying” category, they aren’t going away. I’m not quite as steady on my feet as I used to be, and find myself taking extra care around the home and office. On the other hand, it’s not stopping me walking to and from work, which puts about 32km (20 miles) on my shoes per week, and often more on weekends.
Benign MS is not getting as much attention as the more severe forms, which is quite understandable, but a new research paper from Italy is informative. Full details are here, but the opening and conclusion are the most reader-friendly part, which I will quote from here.
The trend to start disease-modifying therapy early in the course of multiple sclerosis makes it important to establish whether the benign form is a real entity. In previous studies, measures of magnetization transfer (MT) ratio (MTr) have been shown to provide good estimates of the amount of tissue damage occurring in multiple sclerosis brains. Thus, with the hypothesis that if benign multiple sclerosis patients were really benign, sensitive measures of subtle tissue damage would be less pronounced in these patients than in very early relapsing-remitting (RR) multiple sclerosis patients.
We carried out conventional MRI and MT imaging in 50 patients with benign multiple sclerosis [defined as having Kurtzke Expanded Disability Status Score (EDSS) <3 and disease duration >15 years] and in 50 early RR patients selected to have similar disability (EDSS <3) and short disease duration (<3 years).
We conclude that lesional and non-lesional MTr values can be significantly less pronounced in benign multiple sclerosis than in a cohort of RR patients at their earliest disease stages, suggesting that brain tissue damage is milder in benign multiple sclerosis than in early RR disease. This can be due to an extraordinary beneficial response to demyelination of benign patients and may represent the evidence that benign multiple sclerosis truly exists and might be differentiated from other forms of this illness.
The part that speaks loudest to me is the choice of patients who have had benign MS for more than 15 years. Other sources I’ve read stated that benign MS was a temporary phase that would almost inevitably lead to RR or Progressive MS. If there is a significant population of people who have lived with benign MS for 15 years or more, that is definitely a positive sign for me. In particular, if what I have can be medically classified as benign MS, and it is recognised as a separate condition that does not inevitably lead to disability, that should serve to allay the concerns of potential employers. I need to do more research, and consult my famous neurologist again.
No further news on the MS front. I’ve read that I do have to be careful about heat, which could make me more tired than normal. The thing is: I’ve had it for at least a year, and the Dubai heat didn’t bother me much when I last visited, in July 2004. Though we weren’t outside very much, I remember I was less bothered about it than my host was. It didn’t feel as bad as e.g. London in summer, or Toronto when I visited it in May 2001. It seemed to be an “honest heat” – it suited the time and place, and I was prepared for it.
I have a growing suspicion that I’ve had MS in a slowly progressive form for a very long time – like, 20+ years! I had a couple of strange things happen in my teens, which makes me wonder – such as the stuttering, and I had bouts of “restless leg syndrome” (as I know it’s called now).
I want to ask people: have you ever found yourself wondering “what’s wrong with him?” or “why does he do things so differently?” I have, and I don’t get insulted by such questions as long as they’re the start of a discussion, not an opportunity for an insult. I’m a music geek and a computer geek, and am starting to become a MS geek, and I’m learning that MS can have subtle effects that can be misread, even by the person with MS, never mind other people. So if it sheds some light about what’s happening in my head, it’s on the table for discussion. (I’m not a “vitalist”, I don’t believe there’s anything supernatural about me, anything taboo, ineffable, or inviolate.) On the other hand, I can understand that that might make people uncomfortable.
I’ve been wondering whether my brain’s been rewiring itself, slowly, with some subtle effects on my personality. I know some people find it difficult to deal with me, some things I say or do are beyond what they would think of. Like, my attitude towards women, and how it only takes a few minutes around me before they start looking for the door – I come across as too intense, sometimes. I don’t do enough of the bowing and scraping; it’s as if they are used to guys who are aggressive and hormonally-driven, and can’t handle someone who thinks before he speaks, and challenges their most basic assumptions about what they expect, what they do and why they do it. It’s hard to “go with the flow” when you’re grounded on the rocks of reality. (Pretentious? Moi?)
If I’ve been sounding a little “foreboding” in previous posts, well, call it a side-effect of having too much information at my fingertips – by which I mean Internet access at home and work. Troubleshooting and investigation is what I do for a living, on computers, so I could hardly avoid applying the same logic to myself.
To recap: the MRI scan I had last November gave me the all-clear on my spine – only a barely noticeable disc deformation, no other damage to the neck. What did stand out, however, were a few white spots in the central spinal cord. Knowing some of how the spinal cord works, with nerves branching out at various points, this looked like a “smoking gun” for the symptoms I had; the further down the body, the more central the nerves serving it, and I was feeling the effects in my feet. I found it had a name, L’Hermitte’s Sign.
Next stop, a neurologist, in mid-December; he read the spots on the MRI images as scarring due to transverse myelitis, inflamation of the spinal cord. OK, but what caused it? It wasn’t an acute infectious case of the type described in most of the literature, since I certainly would have remembered collapsing and being hospitalised (I think). The next steps ordered by the neurologist were a) blood tests, and b) another MRI scan, this time of my brain.
This is where the “foreboding” kicked in, since it did not take me long to figure out what the scan was for, and what he was hoping not to see in there. The blood work took me a little longer to get my head around: there have been cases where a chronic deficiency of Vitamin B12 led to spinal cord damage.
After the scan, about a week and a half ago, I had to wait until Monday this week for a return visit to the neurologist. It didn’t take long: the blood tests were clear, with cholestrol a little high (though in the normal range). The brain MRI showed at least two small areas of scarring, similar to those in the neck MRI. With two separate scarring incidents, in different parts of the nervous system, almost certainly at different times, the diagnosis was the one I had been expecting: I have a “mild” case of multiple sclerosis.
Next up, I’m being scheduled to see a specialist MS nurse, and may be referred to the Multiple Sclerosis Society of Ireland for discussion or counselling. I’ve also told the neurologist that I’m up for being a guinea pig on trials, and he already has at least one in mind. This is a big year for MS treatment, apparently, with a major new drug undergoing final trials. New patients are what trials need, since patients with a longer history will usually have undergone previous treatment that could interfere with new tests.
Since the MS is obviously going to be a big topic on this blog, for the foreseeable future, I’ve added a category for postings on it. The category name is the default tag on a post, used for flagging the topic in “social networking” services like weblogs.com and Technorati. The abbreviation “MS” is not going to work, it is more typically an acronym for Microsoft (though I prefer M$). What about M§? Nah.
I’ve told a few people at work about this, and they understandably don’t know quite how to react. We have two known MS patients in our building, both of whom were hit harder, at a much younger age, and have restricted mobility (to put it politely), so I think they’re concerned I might end up the same way. This is very unlikely, any time soon.
One person asked whether I had been worried by his reaction when I told him the news, whether he hadn’t reacted the way he was supposed to. Since I have no idea how people are supposed to react in this kind of situation, I’m assuming that everyone reacts in the correct way for them! People would like to know what they can do for me, but there’s nothing I need at this point, except perhaps a little understanding if I wake up one morning with too little energy to put my shoes on, never mind drag myself to work.
The other question is: how do I feel about this? I have no idea how to feel: as a rule, I concern myself with the practical implications of any event or situation. There aren’t any major ones yet, and probably won’t be for a long time. I described my symptoms – the L’Hermitte Signs – as “annoying”, and that’s the way they still are today.
The advance research definitely prepared me to receive the news in an equitable fashion. If I think about the risks I face every day – such as crossing two busy roads on the way to and from work – and all the things in my life that are “not right”, then this is simply “one more thing that’s gone wrong”!
Heading back to work on Tuesday wasn’t as much of a shock as I thought it might be, and I’ve enjoyed a gentle ramp-up of work. Alarms every morning, but no surprises. It takes two to kick my brain into gear – a radio tuned to the Classical FM station, and the beeper in my iPaq.
As mentioned, I’m heading for a second MRI scan on the 14th, a week on Saturday; until I have results, my life is effectively on hold. Based on what I’ve been told so far, and what the radiologist has been asked to look for, a little internet research immediately pointed at what the neurologist suspects. On a purely medical level I hope I’m wrong, and I hope he is too.
On a mental level, however, the diagnosis I suspect would answer a lot of questions about the past and the present. It would tie together some things that have bugged me, and some I didn’t pay much attention to, things it could be a relief to have an explanation for. I could be totally wrong, so I don’t think I should get into specifics just yet, after speculation on my part. So… back to work.
Christmas Day, a notebook computer, and internet access: a dangerous combination? I’ve been on holiday for over two weeks now, and have found it surprisingly easy to forget about work, even when I went out for dinner and drinks with colleagues from work. I’ve had more time to think about various things, as you can see by the increased number of posts on this blog, and the internet access means I’m able to check my speculations against other sources.
Last week someone asked me if I was autistic. No, Stewart, I’m not. Nevertheless; even an oddly tactless question such as that gets me thinking. I note that I may have some of the personality traits associated with Asperger Syndrome or High-Functioning Autism (HFA). There’s another description of Asperger, along with the current USA official (DSM IV) criteria for diagnosis, here.
If I go by that, it’s not a clear-cut case: for example, while I do not like excessively loud noises, it has to be really loud before I feel a negative reaction. I don’t have the same sensitivity with tastes and other sensations – quite the contrary e.g. I like good curry and chili, and have no problem with loud movies with explosions and psychedelia. If I do have Asperger, it’s a mild case. Section B of the DSM description is rather woolly and open to subjective interpretations, in my opinion.
I remember, at a young age, having difficulty with some fine motor skills, wondering “how could that other kid tie his shoelaces so quickly?” and “why is handwriting so hard?” I’m not generally clumsy, however, just never much good at sports. On the other hand, I’m not hyperlexic (knowing many words without understanding them), definitely not hung up on routines and order, nor do I have interests that I follow to the exclusion of others – quite the opposite, in fact.
One particular criterion jumped out at me when I read about it: an inability to hold someone’s gaze. No-one has commented on this, but I have noticed it myself, and wondered what’s up with that. I soon found myself asking why looking at someone, while talking to them, is supposed to be a good thing. I find it distracting, especially when a change in someone’s facial expression indicates a response to what I am saying. Am I supposed to stop, change gear, and say something else in response? Should whatever it is I am saying be “held ransom” to the listener’s reaction, or do I have the right to say it all? I think I do, and I wouldn’t ask someone to freeze their expression unnaturally for my sake, while I’m speaking – it’s not their problem, is it? Rather let me look away and finish saying what I’m saying, before your reaction is brought in to play.
Self-diagnosis is risky, of course, but I find the most convincing evidence in the descriptions of how other people can help; there is specific advice to family and friends to be supportive, think about what they are saying, and avoid vague ambiguity when imparting specific information. HFA, as described here, describes children with communicative disorders, something I did not experience, so I can stop using the word Autism straight away.
I do find it annoying when other people can’t explain what they mean, and constantly wish they could be more precise. I would call that a distinct advantage in my line of work, where the nature of a technical problem can hinge on a small discrepancy in the problem description we get from the customer. This may also serve to explain why being asked if I’m autistic was annoying; since the term autism carries an unjustified social stigma, and covers such a broad spectrum of disorders, it was little better than asking “is there something wrong with you?” It would have been better to make specific references to Asperger and/or HFA. with details of how they might be relevant to me, and links to sources to back up your observations.
So, what now? Am I bothered? Do I need my head examined? I am getting it examined, literally, in about 3 weeks time. (I am scheduled for a second MRI scan, this time on my brain, which I will say more about later.) From a psychological viewpoint, however, the syndromes I’m writing about today are based on modern theories, with diagnoses and treatments that are still experimental and speculative – or so it looks to me. For now, I’ll start with the knowledge I have, and knowledge (as opposed to mere information) is always a good thing.