Obligatory Disclaimers

This post discusses medical stuff. 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.

Multiple Sclerosis (MS) Recap

Multiple sclerosis is a chronic (i.e. you live with it) disease that causes your immune system to attack your nervous system. This can cause a host of neurological symptoms (vertigo, difficulty walking, tingling, reduced eyesight, mood and speech issues, etc. etc. etc.) and it gets worse over time as the damage to the brain and spine accumulates.

I have it.

The Third Attack

For a lot of people (including yours truly), MS operates in two stages. Most of the time, you’re in your day-to-day baseline that’s stable. Occasionally, it’s interrupted by a significant worsening of symptoms (and/or an appearance of new ones) that lasts several weeks. This is called an attack or relapse.

You can read the account of my last attack here.

In the early April, a new one started and as of right now, it’s still ongoing. It is different enough that for a few days I hadn’t even realised it was an attack.

My left leg started to feel a little weird. It felt numb, with tingling, occasionally pins and needles. And just…​ wrong, somehow. At first, I thought it may have been just cold or the leg went asleep or something, but it persisted no matter what I did (walked around, increased the temperature in the room, took a shower, etc.).

It also seemed like it’s spreading. I don’t know when I’ve noticed it first, but it didn’t affect my lower back, belly and private parts right away. I’ve also realised that the skin was getting quite sensitive.

The weirdest thing though was that the altered sense of temperature. Anything that was cold started to feel warm. I’ve first noticed that on the loo as the toilet seat (which is generally slightly cooler than one’s body unless you’ve got those fancy heated ones) felt warm on the left side while the right side had the normal slightly cool feeling.

So next time in the shower, I aimed a stream of cold on it. It was absolutely bizarre! I cranked it to the coldest temperature (something I can’t stand normally), and all I felt in the leg was this strange, but definitely warm and completely bearable feeling.

I’ve also noted the opposite. When taking a bath (I take mine one notch down from unbearably hot) the left leg just felt slightly cold as if it weren’t near the boiling point.

That was the final straw that convinced me this was probably an MS attack and either way I needed to do something about it.

Similar to MS itself, there’s no easy test to determine whether something is or isn’t an attack. You need to exclude any of the other potential explanations (ongoing infection, injury, pinched nerve) and see what remains. The symptoms should also persist (which they absolutely do).

So it was pretty clear-cut in this case. Plus, these particular symptoms are pretty much typical for MS and there’s a been few more things happening at the same time very much in correlation:

The right-hand side of my body (right arm and leg) is weaker now than it should be. Something found in the neurological exam, but also something I definitely feel. It’s harder for me to type and I make more mistakes. Playing the guitar is more difficult too — especially anything that involves more complex movements of the right hand.

And when walking, my right leg feels heavier and I tend to drag it behind when I don’t focus on walking right.

So they gave me the standard three-day IV session of solu-medrol which knocked me out good, but should calm the immune system down. I was extremely fatigued afterwards (sleeping 14+ hours and exhausted the rest of the day) and also noticeably slower in my thinking.

Really bizarre experience when you’re aware you’re making absolutely stupid mistakes and having trouble understanding things that you know you were capable of dealing with before but now you just can’t.

Thankfully, that only lasted a few days during Easter as it was related to the IV medication rather than the attack itself.

Current Status

The attack is still ongoing. My right leg and hand are still weaker and clumsier than before. I feel it’s a little better but it’s hard to judge.

The left leg still feels as if it were asleep a lot of the time. And the weird temperature sensations are still there too.

I’m still a little more tired than I would be normally.

But I’m able to function and while none of this feels great, it’ll pass and I’ve mostly returned back to my normal life. For safety reasons, I’m not driving the car or climbing. I’m also avoiding exerting my body too much. I’m doing less strenuous exercises and trying to avoid stress.

Which is really easy to do as we’re not in the middle of a pandemic while a nearby country roleplays 1938 Germany.

Anyway, now I just need to wait for it to slowly (over the next few weeks) subside.

What Next

In my previous post, I’ve mentioned (hoped, really) that the two attacks established a baseline of around six years. Well, this next one happened a little over two years after so…​ yay.

This, combined with the actual neurological observations suggest that it may be time to switch to a different (stronger) medication.

There’s a tradeoff there, but we’ll see how it all goes.

For now, I’ll have a couple of MRI exams scheduled (one for the brain and another one for the entire spinal cord) and I’ll see my neuro for a follow-up in a couple of weeks.

Update from 10th October, 2022

It’s been several months and while it’s not wrapped up completely, enough has happened to warrant an update.

Still On

Unfortunately, the attack is still seemingly ongoing. I’m still experiencing all the issues with the left-hand side of my body (left leg feeling numb, different temperature perception, touch sensitivity, etc.). The right-hand side seems to do better but not completely back to normal.

Apparently, (and I didn’t know this) the attacks can last anywhere from a few days to several months. This one was categorised as somewhat heavy given the scope of the "damage" and its duration.

So things may get better still (that’s the expected pattern).

But it’s also possible that the attack is in fact over and what I’m experiencing is the result to the spinal chord damage done by the immune system. Really hard to tell now since this is still within the standard range of attack durations.

I can live with it. I can drive, walk, climb, all the things. But it feels really unpleasant. Always there in the background. I’ve been able to tolerate and work around it, but not get used to it or ignore it.

Tests

I’ve had a second IV of solu-medrol after the first one to see if it improves things, but at that point it was a crapshoot. This therapy works best when applied right away. I had some delay and the second dose was right at the end of the theoretical effectiveness.

The MRI was really cool in that it showed a new lesion in the spine right at the place you’d expect one to explain the symptoms I was experiencing. Upon seeing it, my neurologist apologised because she was happy since this had pretty much confirmed everything. But I felt the same way. Always good to get an objective validation.

More Tests

So all this helped us plot the course. Given the amount of time between these attacks and the severity of this one, it’s time to switch to a different medication.

There were several options — they all do pretty much the same thing but they’re applied differently and the underlying mechanism might be different.

We picked up Ocrelizumab (Ocrevus) as it’s an IV infusion every six months. The other options were either an injection every month or tablet every day. I was ready to try something that’s not a shot and I’d rather get it all done twice a year than pop a pill daily.

The guidelines for getting the treatment required a bunch of medical tests as a prerequisite. So in the span of five weeks in the summer I had:

• An x-ray of the chest
• Full dental examination
• Full dermatological examination (looking at all my birth marks etc.)
• An ultrasound of my abdomen
• EKG
• Ear, throat and nose checked up

The primary goal was to detect any active infections or possible malignancies (cancer). Since Ocrevus works by suppressing portions of the immune system, anything dormant might pop out and cause real trouble. The all came back clean, but it was a little tiring and nerve-racking.

Ocrevus

That’s because the way Ocrelizumab (a monoclonal antibody) works is by completely eliminating your B lymphocytes. These are implicated in the immune response that attacks the myelin in the neurons (aka the mechanism in which MS operates) and so by killing them off, there’s basically no one to do the attacking.

As a really interesting side note, Ocrelizumab has been approved in March 2017 and it’s the first FDA-approved drug for the Primary Progressive MS. Which is HUGE. Primary Progressive is basically where you don’t have attacks, instead you just steadily get worse and worse. And none of the standard (or any other, really) treatments were effective. Until now.

Every medication comes with a trade-off. This one is: you slow the progression of your MS (fewer attacks, fewer damage), but it’s an immunosuppressive drug, meaning you become more susceptible to infections and they can be more severe. Oh and vaccines will become less effective (but even more important).

This is not an easy choice to make. When they’re a bit older, our baby will be bringing all the diseases back from the kindergarten and school. Plus we’re well into the third year of this global pandemic which will probably never go away.

But I felt I’ve actually learned a lot of important lessons on protecting myself from infection during said pandemic (masking in enclosed public spaces, carrying a hand sanitiser everywhere, not feeling bad or embarrassed being the only masked up person on the bus etc.) that should serve me well here.

So Sunday 18th September was my last Rebif (interferon beta) injection.

And on Monday 26th September, I had my first half of the first dose. They split the first dose into two infusions separated by 14 days. It’s potent stuff and they want to monitor you throughout the IV as well as see how you react the few days after.

Before the main dish, I got served an appetiser of paracetamol, some anti-histamine (which made me really sleepy) and another smaller dose of solu-medrol for good measure.

Throughout the infusion, they measured my heart rate and blood pressure every 30 minutes or so. Other than the sleepiness, I hadn’t felt anything. However, my heart rate did drop below 50 at some point (my normal resting rate is around 65 bpm). But they just asked me to drink some coke or coffee, that got it up to 55 bpm and everyone was happy.

In the next few days, I felt a little tired but otherwise okay. I was advised to avoid anything that could cause an infection, brush teeth after every meal and don’t do anything that would cause an injury.

So e.g. climbing is out for the next month or so. Oh well.

Complications

Unfortunately, the whole "I know how to protect myself" idea fell apart in less than a week.

On Thursday my wife felt a bit poorly, got really sick on Friday and tested positive for SARS-CoV-2 (aka COVID-19) antibodies on Saturday. That same Saturday, our baby got a fever, runny nose and coughs and while I was still testing negative by Sunday, I’ve had an elevated temperature and this pretty unpleasant cough myself.

Monday, I got a positive test, called my MS neurologist, got prescribed antivirals and hopefully that’s it.

I worried Ocrevus will make it much worse, but thankfully that doesn’t seem to be the case with this particular combination and it hasn’t taken the full effect yet. The B cells should be depleted within two weeks after the second infusion.

The progression so far has been relatively mild — it feels like a really unpleasant cold but with manageable temperature (38.4°C has been the max so far — which isn’t great but I’m pretty much used to those temps). Really bad cough and congested nose and throat, but I’m hoping that’s as bad as it’ll get.

We’ll see in the next few days.

Next Up

The second half of the Ocrevus infusion is scheduled for Monday 17th October, but given covid this will probably be postponed by a week or so.

Overall, while a little drawn out and off to a rocky start, I’m excited about this. Not having Interferon-induced flu-like symptoms (fever, muscle ache, etc.) three times a week feels kind of both liberating and something I got used to really quickly.

After eight years of shots and their after-effects I was definitely ready for something else. Some of the consolidation is nice: with this I was able to stop taking paracetamol or ibuprofen three times a week too (if I don’t, I wake up with massive chills and fever and my sleep gets severely disrupted) which is something I’m sure my stomach and liver will be thankful for.

And I can stop using an ointment to regenerate the damage the interferon was doing to the injection sites on and below the skin surface.

It’s only been a couple of weeks and I mostly don’t notice but every now and then I realise "holy crap, I’d be feeling absolutely rotten today if I still was on interferons" or "huh, I guess I don’t need to take the syringe out of the fridge and warm it up".

Indeed, our fridge has more space now \o/.

This will also greatly simplify my travelling if that ever resumes (I’m hopeful for 2023). Things I no longer need to carry and explain to the border scan people: injections, a box with a large biohazard sign on it (where the used up needles go — you can’t just throw them in the bin), liquid cooling pads (the medication had to stay at low temperatures). All this in the cabin baggage because the meds are really sensitive to the outside temperature.

So it also saves space and weight.

And I mean, all our vacations in the last 8 years were planned with the understanding that I’ll be out of it half the time. That I won’t be able to hike or drive, or do much at all half the time there.

I’ve switched my exercise schedule to daily instead of Tue,Thu,Sat+Sun like before.

I won’t feel bad or too tired when I do talk to people or have to run errands or whatever on Monday, Wednesday or Friday.

And (and this is a big if but a boy can dream), maybe, just maybe my depression was primarily caused by the interferon treatment (it’s a common side effect) so with a little self care and consideration I might be able to do what so many people in my situation can’t: drop the meds and yet feel normal.

But that’s a huge question mark because while depression is a common side effect of Interferon Beta, it is also a common side effect of…​ Multiple Sclerosis. And it’s also possible that it’s caused by something completely unrelated — or a combination of all these factors.

Who knows. I might try to lower the dosage in a few months once things settle and see what happens.

Update from 4th September, 2024

Given how many things were left open in the first update, I wanted to give another one and just never got around to it.

The new job is keeping me really busy and so does our not-so-little one (who’s going to be three years old in October).

In the last update, I’d expressed hope that the attack was still ongoing and therefore things would yet improve. That was a decidedly mixed bag.

My right-hand side of the body has mostly recovered. I no longer drag my leg behind me while walking and the weakness is mostly gone too.

I feel my right hand is even clumsier than before, but it’s hard to know that objectively. It definitely feels that way.

My left-hand side is basically completely unchanged. The grip of my left hand is actually weaker than my right hand now (I’m left-handed so that shouldn’t be).

This is a combination of two things: first, my right hand got stronger thanks to climbing — the grip strength of both was almost identical before the attack. And the left hand got weaker after the attack.

So now my right hand is stronger while my left hand is more …​ dexterous (badum-tish).

But the biggest issue is the left leg.

It still feels numb, tingly, sensitive and as if permanently asleep. It still doesn’t process feelings such as temperature correctly. So when I’m taking a hot bath, it feels as if the water is lukewarm rather than hot.

And that really affects my ability to relax. And as far as I can tell, there’s really nothing I can do there. So now I carry a permanent reminder of the disease and the damage it’s done.

I’ve learned to live with it (it’s still such a tiny problem in the grand scheme of things) but it’s there and it isn’t fun.

Ocrevus (the new medication) is absolutely fantastic. I’ve had several infusions and the fact I’m no longer taking injections that make me feel like shit is absolutely ground breaking.

I don’t know how I would handle everything that’s going on now with that additional burden. I don’t even know how I did handle everything back in the Interferon Beta days.

I am protecting myself much more than the regular person. Masking basically from early Autumn to late Spring. Always having a hand-sanitiser ready, washing hands thoroughly.

So far, I haven’t been more sick than previously or more sick than the rest of my family.

But as mentioned before, there’s no way to protect myself with a little child socialising and having regular toddler activities. And especially now when they started the kindergarten.

We’ve also all just recovered from another (second) infection of COVID-19. And this fucking shit just hits hard. I’m happy for everyone who’s either completely asymptomatic or has mild symptoms. But it knocked me out cold. I was barely able to get out of the bed and that’s with having had four vaccine doses, one direct shot of antibodies and one prior infection.

But the virus mutates and my body no longer generates lasting post-infection memory. And the vaccines are essentially ineffective so there’s little sense in me taking them.

I’d also expressed hope that getting off Interferon could mean possibly getting off my depression/anxiety medication.

And I have indeed been stable on the lowest dose for a very long time. So we’ve tried it. And at first, it actually seemed like it was working!

I did sleep a bit worse (the meds help with insomnia too — which I struggled with as well), but very much manageable with the right sleep hygiene and a toddler who leaves you utterly exhausted.

But then, a few difficult things arose and my anxiety levels shot through the roof. The depression was kept at bay, but I was spiralling out, plagued by intrusive thoughts and endlessly replaying imagined conversations in my mind and it took a massive toll on my well-being.

So I’m back on my meds, sleeping like a baby and the anxiety is mostly kept in check. It still spikes up, but when it does, I’m able to deal with it better and it doesn’t leave me a wreck for weeks on end.

Though that is something I feel I need to work on more. Still no fun when it happens and in my life, there are enough triggers that just hoping nothing bad happens is wishful thinking.

So yeah, not the greatest news, but life goes on, things are mostly stable again and I’ve got plans to address what’s not.

Oh, and no new attacks so far! Hoping that will last for a really long time.

by Tomas Sedovic on 3rd May, 2022