Archive for the ‘multiple sclerosis’ Category
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.
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”!