This post discusses medical stuff. Please note that I’m not a doctor and I’m not your doctor. Nothing here is meant to be either giving or asking for medical advice.
I find reading about other people’s accounts of their weird medical experiences fascinating. Maybe this will be interesting to you.
I’ve got an auto-immune disorder called Multiple Sclerosis. What that means is the immune system sometimes decides to attack my brain. Specifically, it targets the myelin sheathing that isolates axons (the wire-like things exchanging messages between neurons). As the myelin gets depleted, the neuron communication is slowed down. This results in neurological damage.
There are different forms of the disease, but the most common one (relapsing-remitting, what I seem to have) presents itself via “attacks” or “relapses” where the immune system starts goes haywire for a while and targets the brain.
During the attack, depending where it’s concentrated, certain neurological functions are significantly disrupted. After the attack has passed (usually after 2-4 weeks), the person returns to normal, albeit usually with some permanent damage.
Over time, the damage accumulates, leading to neurological decline.
I’ve just had my second attack. This is… not great, but it’s also not all bad news. Ever since the diagnosis (which was triggered by my first attack – though I hadn’t known that’s what it was back then) I was wondering how often will they happen, how will I recognise them, how will I be able to deal with them, how severe and what will the consequences be.
So now there’s a baseline.
I got suspicious (not really certain, more like an “is this it?” feeling) on the late evening of 27th November 2019 right as I was going to bed. I felt really dizzy which is a common feature.
Getting a brief flash of vertigo happens to me all the time. They usually last for a second or two and they’re not particularly severe. I’ve never fallen over or anything (but I do take precautions). But sometimes it does persist for longer.
So I went to sleep thinking it’ll probably pass, but noting it anyway. Just in case.
Well, it got much worse in the morning. I had trouble walking straight and my head was spinning continuously. This strengthened my suspicion, but the protocol before seeking emergency treatment is to wait if the symptoms last for a full day.
I’ve had an unrelated doctor visit in the morning and a normal working day ahead of me. So I went to the doc, observing what’s going on. I’ve never been drunk to a degree where my movement would be impaired (my drinking max is about ~80ml of whiskey spread out over an evening), but this is what I suspect that feels like.
When I got home, I’ve realised I was unable to work. This was three days before my December vacation, but I had to take a sick day. I could not focus on anything. Couldn’t hold down any food either as it soon turned out.
This was eerily similar to my first attack except for the vomiting. That hadn’t happened the first time around. I think my head was spinning so much that I was basically suffering from a reversed motion sickness – my body was still, but the head disagreed violently. The vomiting at least subsided the next day, thank goodness.
So the next day my wife helped me get to the neuro ER at the university hospital where I’m being treated. Where, after some waiting, blood tests and an examination by a neurologist I’ve been put on my favourite (not) treatment ever: IV infusion of corticosteroids.
So first, IV kinda sucks. I’ve had a needle stuck in my arm for three days. Second, no sugar allowed (I really like sweets). Third, yes this is the standard emergency MS attack treatment – but it does this by suppressing your immune system – so please try not getting sick in December when you wife is a an elementary school teacher.
And lastly, the first (and worst) ever bout of depression I’ve experienced was five years ago when I got put on the same corticosteroid meds. It was really bad – that’s when I started having suicidal thoughts (weak, but they were there) and what prompted me to seek mental help.
I was more ready and much better equipped to deal with it this time, though. So it was mostly just unpleasant.
So yeah, some IV, other meds, a neuro visit a week later, another three-day IV afterwards, lots of blood draws and finally an MRI.
The December plan included two solid weeks of vacationing, followed up by a work-related trip to Manhattan right before Christmas and then a break until the end of the year.
I wanted to take it easy with, take walks every day and go climbing every other day. So of course all that went out the window (including the New York trip). I hope to go climbing early January, should be fine then. But yeah, it wasn’t the R&R I was hoping for.
What It Felt Like
The first few days were the most difficult. Other than the vomiting, my head was spinning literally all the time. It meant I was unable to read, program or play computer games. Every head movement (say looking left and right before crossing the road) exacerbated it.
In addition, I had a really hard time to focus on anything and once I did, changing focus was quite difficult, too. Anything that required any sort of multitasking – even say watching a movie and paying attention to both the story and what was shown and said – was really challenging. Anything with subtitles was completely impossible.
For example, I’ve tried watching an episode of Last Week Tonight with John Oliver and there were too many stimuli to process. I was unable to do it. Even following multiple people talking (e.g. in a podcast) was tough.
This was a super weird feeling because I obviously knew I was able to do all these things, but they were extremely tiring and really hard to focus on so I kept zoning out, not taking anything in.
The only thing I found I was able to do with relative ease was watching climbing and bouldering competitions. I think it may be because the pace is quite slow and each athlete climbs the same route, so there’s enough familiarity and repetition that I was able to process it without losing focus.
Thankfully, I’ve had pretty much the full 2019 backlog saved up, so that’s what I’ve spent all the time doing.
As mentioned before, I had a really difficult time walking straight. I had to adopt a slow and deliberate style. Normally when I walk around the flat or outside, I don’t focus on it. I’m looking around, listening to something, doing something. I couldn’t do that any more. Just walking in a straight line was a task that occupied most of my attention. If I needed to do something else (like look around), I had to stop, do that and then look straight ahead and resume walking.
After a few days, the constant vertigo subsided and returned to the more familiar dizziness flashes. They were longer and more severe, but more manageable. And every day, things got a little better.
All and all, I think this one was more severe than the first attack, but it’s hard to compare two memories five years apart.
Where Things Are Now
I am mostly back to normal. My head basically no longer spins at all. I keep getting the vertigo flashes and they’re still more frequent and stronger than before the attack. Walking in a straight line is still a challenge, every now and then I just start drifting left and need to take an conscious effort to course-correct. But it’s all manageable now.
I’m hoping this will all dissipate, but there’s a good chance things will be a little worse permanently – that’s what tends to happen after attacks.
That said, I’m well enough to resume my daily walks, doing balance exercises and soon climb.
I’ll have to be a bit more careful before I start driving again, but that shouldn’t be more than a couple weeks assuming things keep getting better. The good news is that climbing and balance exercises help.
Although, it it stays on the current level, I will probably have to stop driving for good. It would not be safe. I hadn’t realised this before, all my thoughts of any significant impact were towards ending up in a wheelchair hopefully a few decades in the future. But driving requires a degree of focus, multitasking and a sense of body awareness and balance that I might lose much more quickly.
I’ve had better Decembers. And better times off work.
But still, I’d had five years of no attacks and the permanent effects of this one seem very much on the mild side. Oh and hey, any lingering doubts whether I really have got MS are now completely gone :-). Better to know than to wonder.
23rd March, 2020 Update
It’s been a few months and things are completely back to where they were before the attack. Thank goodness.
The latest MRI scan didn’t show any new developments either, nor did the subsequent neurological exam.
This is pretty much the best news I could have gotten.