Storm clouds

On Friday, September 12, 2009, I awoke with a slight sensation of partial numbness / tingling on the underside of my right foot. I didn't think much of it at first, naturally assuming that I had just slept on my leg or something like that, and expecting the sensation to go away shortly. However, instead of going away, it in fact began to grow worse, spreading to parts of my right side all the way from the neck down. By the time Monday rolled around, I was convinced that something was definitely not right; due to my history with my mother's illness, Multiple Sclerosis was pretty much the first thing that popped into my head, but of course I knew that there were a variety of other possibilities (such as a compressed nerve).

I made an appointment to see my GP, who examined me, but couldn't find anything particularly wrong; the only thing out of place was an elevated blood pressure. He agreed with me that the symptoms were potentially concerning, and admitted that hypertension was an unlikely cause of these particular symptoms, but prescribed indapamide for it anyway, with instructions to notify him if there was any change in the presentation of the symptoms, and otherwise just see how things go. Over the course of the next week, there was not much change in the symptoms; they seemed to vary in intensity and coverage over time, but becoming a little more pronounced. The sensation on the right side of my chest/stomach was particularly irritating and disruptive to my sleep: when lying down, it felt as if I couldn't breathe properly due to my chest not moving, even though there was no such actual obstruction — a rather disconcerting sensation.

The following Monday (September 22), as the symptoms had shown no signs of improvement, I contacted my GP again; he requested that I have my blood pressure tested again, to see if that had gone down yet. Strangely enough, it hadn't — the reading came in at 176/96 — but he referred me to a neurologist anyway, with an appointment arranged for the next day. The neurologist ran me through a more comprehensive series of tests, checking for loss of sensation, abnormal reactions, and so on, but also couldn't find anything specific; all of the affected areas felt "funny", but there was no loss of actual sensation, and all of my nervous responses were normal. He did check my blood pressure again, which was at around 160/80, but he suggested that this was probably just due to stress / anxiety, and that it would normalise after the whole situation was dealt with. His final conclusion was the most likely cause was something transient that would go away by itself; possibly a side-effect of a viral infection, just plain stress / anxiety, or various other possibilities along those lines. However, he wanted to send me for an MRI "just to be safe", even though he expected the results to come back clear, and I agreed to the procedure.

The MRI was two days later; not having been for an MRI before, I was not sure exactly what to expect, but the whole experience turned out to be rather boring. For one thing, I arrived around 15 minutes early for the appointment, only to find that they were running around 20 minutes late, so I spent a good while waiting around. The MRI itself consists of lying down on a tray of sorts, being instructed not to move your head at all, and then being slid into the machine itself for a good 30 minutes. I was somewhat bemused when they hauled me out halfway through to inject the Gadolinium dye (used to increase contrast on the scan), with the nurse giving me strict instructions not to move my head, and then quizzing me about which side my veins were better on as she attempted to find one in order to perform the injection. (How the heck would I know? I can't even see my veins right now!)

I received a call from the neurologist's rooms the following week to set up a follow-up appointment to discuss the results of the MRI. I figured this was just standard operating procedure, but once I arrived for the appointment and he began easing very slowly into the subject of the results, I immediately figured something had to be up, and indeed something was up. The MRI showed several spots of intensity, "compatible with active demyelinating / M.S plaques" thus indicating lesions and associated swelling in the surrounding area, and suggesting that I had in fact undergone several attacks / relapses prior to this event without even realising it.

According to the neurologist, the diagnostic criteria for Multiple Sclerosis would still require an additional "event"; either another presentation of symptoms consistent with a second relapse, or a subsequent MRI displaying further progression of the disease, but basically the reality was that I have MS. Some subsequent research indicates that in the (extremely unlikely) event that there is no further progression, this would be known as Clinically isolated syndrome. He then ran through the possibilities for treatment; at this stage, that basically amounts to the beta-interferon-related drugs, which do not cure the disease, but have a modest effect in slowing the progression of the disease. He also mentioned that various next-generation drugs are likely to become available within the next several years, which will likely be even more effective at slowing the progression. He also advised me to go onto the standard post-relapse treatment, which is a pulse of cortisone administered intravenously; this has no effect on the long-term progression of the disease, merely assisting with the short-term recovery, but he suggested that it would be easier to get approval from my medical aid for chronic medication if we were doing everything "by the book".

(One amusing part of this was receiving my copy of the MRI results in one of those huge X-ray print envelopes… containing nothing but a CD with the actual imagery, and an A4 printout with the radiologist's report, leaving a whole lot of empty space in the envelope.)

As there is, as yet, no long-term data on the comparative effectiveness of the different drugs that are available; the first of them was only approved in the USA in around 1996, and of course it took longer than that for medical aids etc. to begin paying for it, so most people have only had access to the drugs for around 5 years, probably 10 years at the most. I decided to go with Avonex solely on the basis of it being a once-a-week injection, as opposed to the others which require more frequent injection; although, as an intramuscular injection, the procedure will be somewhat more unpleasant. As of this writing, I am still awaiting a response/approval from the medical aid for chronic medication for MS.

My prognosis is currently reasonably positive; as the current treatments act to slow the progression of the disease, beginning treatment as early as possible in the course of the disease is obviously crucial to success of the treatment. With luck, the disease will be slowed to such a degree that by the time the symptoms become severe, I will already be dying of something else anyway. One interesting fact is that an early age at onset is correlated with a more positive progression of the disease, so my relatively young age at this point in time is not necessarily a bad thing. However, there's a huge degree of uncertainty in all of this, so the only real way to know how things will turn out is to wait and see.