Multiple Sclerosis
personal, health
WARNING: This is a personal post about a medical condition. I am not a doctor and I am not your doctor. Nothing here is a medical advice. The only medical advice I feel qualified to give is this: if you think something’s wrong with you, visit your doctor!.
Also, this post discusses mild depression and suicidal thoughts. If that triggers you, I’m sorry and sincerely hope you’ll get better! <3
As I’m writing this, my body temperature is coming down from a high fever to mostly tolerable 38.6 °C. Or if you don’t like the Celsius scale, 311.75 Kelvin :).
I am sick, but the fever is a side-effect of the treatment, not the disease.
My teenage self would have had trouble believing that MS could stand for something I’d grow to dislike even more than Micro$oft.
The Winding Road
Four years ago, I had a typical viral infection/cold after which I’ve experienced a couple of strange symptoms. The hearing in my left ear started to become muted and distorted and I started to experience an dizziness – as if I were mildly inebriated. These seemed to wax and wane but never disappearing completely.
My first suspicion was that of an inner ear infection – that would plausibly explain both hearing and the loss of balance. My physician thought something similar and so she sent me to an ear specialist.
The ear doctor did not find any signs of infection or loss of hearing. She concluded this was probably caused by too much stress (I have travelled for long distances several time in the span of the preceding two months – an activity that always takes its toll) and that I should try to avoid any.
She did, however, sent me to a neurologist just to eliminate the off-chance that this is something more serious.
The neurologist opined that this may in fact be a Ménière’s disease but, again, to eliminate the small chance this could be something even more serious than that, she ordered my first ever MRI.
Undergoing an MRI scan of the brain and spinal chord is a strange experience. First, you must eliminate any possibility of having a bit of metal that would respond to a magnetic field in your body. MRI is an incredibly strong magnet and any metal within or without the body would be highly dangerous.
Since I’d had a badly broken wrist 15 years ago and was not entirely sure whether they’d put any screws in to stabilise it, I had to have my hand X-rayed (there was nothing there, but now we knew for sure).
I was also asked whether I’m claustrophobic. I am not, but you never know how you’d react when they put you in.
Inserted in the tube, you can see the “ceiling” about 10 cm above your eyes. It is quite an unpleasant feeling indeed. They try to calm you down and you’re given a device that will summon the nurses / doctors if you feel uncomfortable or start to panic, but it’s still not great.
Luckily, I did not panic and managed to stay motionless for the required 30 minutes or so. It is a highly uncomfortable procedure producing (something I was not prepared for) the most unpleasant loud sounds. They put earmuffs on me, but they didn’t feel to have helped much at all.
This is what getting an MRI scan sounds like. Wait for the 30 second mark where it gets going properly:
https://www.youtube.com/watch?v=6Aj2QspPf7s
Weird, right?
The noise is loud, irritating and irregular so it’s hard to get used to. Some people report falling asleep, but I could not even when the procedure started at around 5AM.
I do think the sound has a great potential for creating a heavy industrial Techno track, though.
Personally, I occupied myself tracing the cracks in the tube’s ceiling and trying to remember the exact wording of “The Hardest Logic Puzzle Ever” so that I could begin attempting to solve it. My memory being what it is, this can easily occupy me for half an hour.
On the other hand, I got to have my brain scanned by a giant superstrong electromagnet. That is brilliant.
When the results came back in, the neurologist said that while I don’t seem to have any evidence of a stroke or spinal injury that could have been causing my issues (good but a little dissatisfying: so what is wrong with me then?), the findings might correlate with Multiple sclerosis.
I had heard the term by then, but did not know what it meant. Not really. The doctor reassured me that the chance is not very high, but that it is a serious disease that ought to be treated properly if it is indeed what I have. She then sent me to an MS centre for a definitive diagnosis and asked that I update her on the progress as she’s always been fascinated by this stuff.
Being a bit of a nerd myself, I was happy to find a kindred spirit and promised to do so.
Avid watchers of House M.D. are now aware that we’re past two incorrect diagnoses and this one is therefore the real deal.
The neurologist at the MS centre echoed that I should not be worried and more likely than not, this will not end up being MS. Still, a diligence was due.
As it turns out, verifying MS is not a simple task. It usually takes a positive MRI scan (check), one or two attacks (my initial hearing/vertigo episode qualified) as well as ruling out any other potential causes that would manifest in a similar manner.
That included a handful of blood tests, evoked potentials and much more frighteningly, a test of my cerebrospinal fluid, sampled via lumbar puncture.
They take a sample of the fluid surrounding your brain and spinal column by sticking a needle between your lower-back vertebra. If that doesn’t send a shiver down your spine (no pun intended (actually, scratch that, the pun is totally intended)) then you either know much more or much less about the procedure and human biology than I did at the time.
First though, I had to have my eyes checked (wut?). This is the bit I understand less, but there are certain eye-related conditions where the lumbar puncture could be dangerous. I’m guessing that it’s because of the potentially reduced pressure inside the scull (due to some of the liquid being taken out), but I have no idea. Biology is hard, okay?
On that topic, I have shared what I’ve been going through with my close family (my wife obviously knew from the get-go). My mum was understandably worried (so was I but I tried not to show it – I also still did not look up what MS is to not worry needlessly).
When the eye tests came out all good (one of the tests involved blowing a bit of air straight to my eye – a brief, but entirely unpleasant affair), she was relieved and told that she read about this and it should mean that I do not have MS and the rest is just to cross the t’s and dot the i’s.
Which just shows you how useless online medical research can be when performed by a layman.
The eye exam had no effect on the MS diagnosis, it was just there to establish the safety of the lumbar puncture.
Next up, Evoked potential. That’s an interesting series of tests where they put electrodes under your skin (ouch!) and measure your nerve responses to given stimuli.
There were several tests, but I only remember two. The first one was sending a small electric shock to my big toe (not painful, but unpleasant) and the second one involved me looking at a point at a screen while the background in the shape of a chess board was switching colours.
The way I understand it, these tests produce a repeated stimulus (and know when they’ve done so) and then measure whether and how strongly is it propagated to the corresponding nerves.
So if there’s something blocking the transmission, you can see it. It was not the most pleasant experience (the electrodes did have to pierce my skin in various places – the scalp and abdomen for example).
At this point, I started to become increasingly worried. The spinal tap seemed inevitable and no one has mentioned anything about the blindingly obvious risk of paralysis when they start sticking needles in there. I was awaiting a call saying that it’s all been a huge misunderstanding, that I do not in fact have the disease and that no other tests were necessary. It never came.
As an aside, while it has been a long and trying period (we’re now about 5 months after the initial attack), I am for the most part really satisfied with the health system. However, there were a few points such as this one where a key aspect should have been communicated more clearly. On the other hand, despite my mounting worries I did not ask anyone so part of that blame lies with me.
Despite the fact that the needle was being inserted between the vertebrae (where the spine famously resides), it does so at a place where the spinal chord ends and what remains is a loose collection of nerves that just move out of the way. So a risk of serious injury is actually quite small.
I seriously wish they’d just told me that. I looked it up on my own and became much calmer afterwards.
The procedure was done without an anesthetic. They sat me on a chair, asked me to bend over and inserted the needle. It hurt but not much more than a blood draw. Still, once is more than enough.
I was then instructed to lie down for about two hours after which I had to be taken home by car (my father in law drove me back).
As I was lying in the waiting room, another person was clearly about to undergo the same procedure and he was quite distressed about it. Much more than I was.
He was talking in English (I seem to recall hints of an Italian accent but who knows) and the nurses tried to calm him down and explain things, but they weren’t particularly successful. Any communication issues I’ve experienced in Czech were increased by the foreign language barrier.
I hate talking to strangers. Especially when I have to approach them myself. But this person was clearly nervous and worried. So, head spinning, I walked up to him and explained that I’d just had the same thing done, that it didn’t hurt that much and why it was safe. It seemed to have helped.
A lot of my friends, colleagues and acquaintances live in Brno without much trouble despite not speaking Czech, but there is an occasional confusion and I always try to help if I can. My English is far from perfect, but it tends to be better than that of an average Czech so this is one of the few areas where I can be genuinely useful to strangers.
The Mother Of All Headaches
I was instructed to go home, lie down and try to move as little as possible for the next few days. I was becoming more and more dizzy in the car and my head started to hurt, so I was in no mood to disagree.
Then the worst headache of my life started.
I have never before or after experienced anything even remotely like it. It was absolutely horrible. And the more upright I was, the worse it got. Even propping up my pillow was excruciating. Trying to actually sit up or god forbid walk was absolutely out of the question.
This lasted about 2-3 days and I have zero recollection of what I did then. Probably tried to sleep.
I had been an avid player of Spelunky at that time and when I was finally able to rise and sit upright for a while that I booted the game up and finished Hell (the secret super hard level) for the first time. A major achievement for any budding spelunker.
A brief digression on computer games: there has always been a lot of talk of their uselessness (“read a book instead!” – a sentiment that, I, being the avid reader I am, find particularly shortsighted) and outright danger to individuals as well as societies.
Well, screw all that. It’s nonsense.
Throughout what was one of the hardest periods of my life, computer games in general and Spelunky in particular have been one of the few reliable constants. Their ability to actively occupy the mind must not be dismissed out of hand. It is hard to read or watch a movie when you’re in a constant agony. A game is able to literally take your mind off that pain (physical or mental) or worries in ways that other media simply can’t.
Anyway.
A few weeks later I went to the MS centre again for my results and the doctor was much more serious this time. She transferred me to (“another! When will it stop!?”) neurologist in the same centre who’s specialised in MS and can confirm the final diagnosis. Her parting words were “whatever you do, hold on to that doctor!”.
And I did.
Another month has passed before I got to see this genuinely last in the long chain of MDs I met throughout this.
The first meeting was rather difficult. I don’t think I was in full denial, but I was still under the impression that there’s some wiggle room and that we need to order another series of tests or at least take a hard look at the data.
But instead, she started to explain what MS was, how it’s probably going to affect me and what can we start doing about it.
I thought that was a little rushed, so I asked whether we can be sure it really is MS for actual realsies (I have read up on it in the meantime and was not amazed). Which is when she pulled up the cerebrospinal fluid results as well as the MRI scans (being able to zoom through the structure of your own brain is soo coooool – unlike X-rays, MRI produces a full 3D scan of the tissue) where she showed the actual brain damage caused by my first attack, how it was located in an area that processes one’s sense of balance, how the evoked potentials showed corresponding lack of nerve response (that one was a bit of a blow) and how they discarded the other possible causes.
This thing was real and I had to deal with it.
I was a little relieved, actually. Months after the initial symptoms it felt like we were not getting closer to the underlying issue. And now we did.
I think what really broke it for me was all the tiny little things I could never explain. That my hands and feet keep getting icy cold. The shaking hands. The occasional muscle twitches. Et cetera.
Later on, I have also read some of the papers the doctor published and one of them was a case study of a patient who was incorrectly diagnosed with MS and how she managed to discover and correct this. So my initial fears were swayed even more.
The Treatment
The (un)pleasantries out of the way, we started discussing what to do about it.
Unfortunately, Multiple Sclerosis has no known cure. The existing treatments focus on slowing down the progress (brain damage) of the disease.
Patients with MS get their brain attacked by their own immune system (MS is an autoimmune disease). This often happens in outbursts when the symptoms worsen (called attacks), but in some modes it just progressively gets worse and worse.
All else being equal, the patient experiences a loss of motor control and other brain function (speech, sight, etc.) as the time goes on. I will likely end up on a wheelchair at some point.
So the treatments try to reduce the frequency and severity of the damage.
When we got to discuss this, I received a rather unpleasant blow: the treatment usually involves regular (self-administered) injections with side effects resembling flu-like symptoms (fever, chills, muscle and joint ache, soreness and headaches – all of which I’m experiencing right now, yay).
I don’t remember the details of that conversation, but the doctor was trying to decide between multiple different drugs and asked whether I’d be okay taking injections every day or whether something like 3 times a week would be better.
How would you answer that? I have just learned I’d have to be giving myself regular injections (for the rest of my life) and I didn’t even know whether I’d be capable of doing that. I don’t have a needle phobia, but doing this to myself? What if I’m literally unable to do that?
I’ve basically said as much, explaining that I can’t even imagine this so the distinction between a shot every day or every other day did not feel that important. Given the frequency, I’d probably have to get used to it anyway, so it didn’t really matter. Just make sure you give me the best meds I can get.
Now, this medication is really really expensive and the health insurance requires a few days of taking intravenous corticosteroids followed by a taking them orally and slowly weaning off throughout a month or so before going through with it.
The Deep End
If you read up on corticosteroids, the side effects are horrific. Luckily, my course seemed to have been going great. I had to remove sugar from my diet, but that was it.
Or so I thought.
The nasty thing about depression is that can be hard to realise you’re experiencing it. I’d never had real depression (as opposed to just being sad) before. I knew enough to know that it was not just someone being sad or lazy. I’ve read a few experiences and it sounded fascinating and horrific at the same time.
Your brain lying to you. How can you even think when it’s the thinking that’s under attack?
It crept up on me without me realising. I just became progressively more sad, distant, less involved, less interested or even able to do anything. Less able to feel and enjoy anything. I was more irritated, blew up on my wife (then girlfriend) a few times. My sexual drive was much lower as well. And I had serious trouble falling asleep.
It was at that time that I tried to play Depression Quest. It is a game by Zoë Quinn (I didn’t know about her at the time, this was before one of the most abhorrent times in the videogame history).
I was still not conscious of my depression at that time. The reason I went on to play Depression Quest was because I was interested what was depression about. How do depressed people think and behave. Also, because depression was listed as one of the common side effects of the corticosteroids and since I clearly didn’t have it (I was actually mildly disappointed at that time that I didn’t get to experience it), I wanted to see what it is about.
Depression Quest puts you in the shoes of someone who is depressed and you go through their life. You get to make choices for the character along the way and I tried to put myself in the shoes of someone like that and behave as I would have.
In the end, the character’s depression worsened and their life has become an utter misery. I figured that was the point of the game and left it at that.
(it was years later when I’ve heard an actually mentally healthy person talking about their experience in the game. They had the same intentions, but managed to “win” the game and get their character in a stable place. I was really surprised to learn that since I thought the game would just always end badly and that was its point.)
At the end, the game listed several symptoms that could mean you are depressed if you have them. I had experienced a lot of items on that list, thinking “hey look even perfectly healthy stable people can have these, fascinating”. The denial was strong.
Now, I’ve been really into (mostly indoor) climbing at that point and there’s this one aspect that tended to stick with me. When there was a route I could not finish, there was usually a sequence of moves I had to do and did not know how.
Climbing is all about body positioning and moving efficiently to not waste your strength and endurance for the hard moves.
Every time my mind idled, it would quite spontaneously visualise the climbing problem I could not solve and tried to solve it. Just like a puzzle.
At some point, I’ve realised this was replaced with mental images of me slicing my wrists or hanging myself. I had no intention of doing any such thing but it really frightened me. I became really self-conscious around the knives in our kitchen.
All this time, my doctor (I’ve been having regular visits) kept asking about my mental health and how was I feeling and that they had a resident psychologist I could talk to – I had to just say the word.
And that idiotic slow dumb brain of mine finally put two and two together and relented.
In retrospect, it was absolutely blindingly obvious. But depression lies. Even at my worst, I think I only had a mild case and still I only barely managed to climb out of it.
I started seeing a psychiatrist, took a long hard look at my sleeping habits, started taking medication and things are mostly under control with a few bumps here and there. It took a good part of a year though. And it’s a continuous struggle.
Anyone out there reading this and struggling with depression: <3! Email me, ping me on IRC, tweet any time, I’ll happy to talk with you no matter who or where you are.
The Treatment Part Two
Eventually, we stopped the corticosteroids, the health insurance approved the long term medication and two weeks after my wedding, I found myself at a hospital learning how to stick a needle into my thigh.
There were about 5 or 6 of us – all women (and me). MS is about twice as common in women than it is in men. I was also the only one who brought company (my wife).
We’ve made several practice runs on this little padded bit soft plastic. So we learned how to stick the needle right (it’s a subcutaneous injection – meaning it goes under the skin, not a muscle or vein – and that makes it easier).
And then we were about to do it for real, there and then (so they can leave the syringes with us and know we’re able to administer them ourselves). Everyone else except for my wife and the nurse left and I was supposed to unpack the needle and stick it in.
I hesitated. About twice I think but who knows. It was not my finest hour.
In the end, it wasn’t so bad. These needles are thinner than the one they use to draw blood so they should hurt less. On the other hand, when you squirt the liquid in, it creates a pressure which is not exactly pleasant.
But I managed and I was warned that I’d probably experience some flu-like symptoms later that day.
Yeah.
A couple of hours in, I started to feel a little under the weather and soon after that, I got strong chills and a fever. And that was with one fourth of the ultimate dose (you start low and ramp it up each week).
A week later came the hardest part. The shot in the belly. See, this medication is not particularly benign to the surrounding tissue so you have to rotate the injection points. There’s one in each thigh, buttock, arm and belly (on either side of the belly button).
Getting an injection in the belly was one of my strongest childhood fears. I was terrified of that.
Turns out, it’s not that bad, but I won’t lie, it’s not great either. That area is quite sensitive for me and it just hurts. Not “I can’t do this anymore” hurts but still.
The following six months were accompanied by a trepidation every time I was supposed to take the meds (three times a week, with a day between shots). I kept hesitating and almost but not quite sticking the needle in. Sometimes I had to do it twice because I didn’t squeeze all of the dose in the first time.
Eventually, it got better. I wish I could say the pain stopped or that I got used to it, but that’s not true. I’ve just accepted it. Yeah it hurts. Yeah I’m literally injuring myself. So what. Has to be done.
I have skipped a few shots for logistical reasons (mostly when travelling), but never because I was too afraid or unwilling to do it that day.
I have taken my belly out of the rotation for now though. I’ve been using all injection sites for about three years and then decided that for as long as the local reactions don’t get worse, I could afford this small quality of life improvement. The belly shots were never significantly worse than the rest, but they were more unpleasant.
The Adverse Effects
So I’m taking these shots three times a week. The most common side effects are the flu-like symptoms.
As far as understand it, for most people, these get better or disappear almost completely within the first year.
That’s not the case here.
Almost every time, I get high fevers during the night (I take the shot in the evening and try to sleep through the worst – this was recommended by my doctor and it’s mostly working). For about two years, I was getting regular chills and my sleep was getting severely disrupted.
I would fall asleep and then wake up and start feeling really cold at about 2-3 AM. I would start shaking uncontrollably for about 15-20 minutes, then the chills would stop, replaced by a fever and I would be able to fall asleep, albeit with feverish nightmares.
We’ve discussed this with my doctor and decided to take NSAIDs (e.g. Paracetamol or Ibuprofen) pre-emptively every evening before I take the shot.
This is not ideal (NSAIDs are not exactly harmless), but balanced against the physical and mental problems that arise from a constant sleep deprivation would be worse.
Most of the time, this helps me to completely sleep through the night. I still have a fever when I wake up (that usually lasts for the entire next day). But I’m able to sleep.
Mostly.
Occasionally, it just gets bad and I wake up with chills and high fever and nightmares and no possibility to fall back asleep past 4am anyway. Like today.
But that’s a relatively rare occurrence, rather than a semi-daily issue.
Now the frustrating part here is that this has nothing to do with the MS directly and everything to do with my medication. Truly, this is the “cure worse than the disease” scenario.
Or is it?
This is one of the cases where it’s impossible to judge on an individual level. No one knows how would I fare without the medication. Or with different medication.
This may give me extra 10 years outside of a wheelchair. Or indeed extra 10 years of life. Maybe I would go blind on one or both eyes already or in the next few years. And maybe the meds really do nothing (for me). But that’s all just speculation with no use.
I am getting regular check-ups, blood work, neurological exams as well as yearly MRI scans of the brain. And so far, there has been no change. Which is good news because it means the disease has not progressed.
And, for the most part, I am perfectly able to function. I tend to feel more tired the day after the shots, but that’s nothing a few adjustments don’t fix. On those days, I try to avoid any physical exertion. I don’t go out and socialise. When possible, I work from home. I don’t drive. I try to take it easy.
And all the other days, I live as if nothing were wrong. I climb. I walk. I go out.
There are challenges, but life is mostly good.
Multiple Sclerosis
Even though most of my struggles stem from the adverse effects of my medication, the disease itself does affect me in a few ways.
The most serious is the depression. About 50% of MS patients struggle with depression and I’m among them. The medication I’m taking lists depression among the side effects as well, so I can’t be sure whether it’s caused by my meds, my disease or me knowing that the meds and the disease cause depression.
It doesn’t really matter anyway.
Here’s what does matter: I have learned that sleep has a strong effect on my overall well-being and I’ve taken steps to take advantage of that. I improved my sleep hygiene, I’ve learned the profound art to go to sleep when I start feeling sleepy, I have learned that a single uninterrupted block of sleep works best (my ideations of saving time by polyphasic sleeping have been mostly gone by that point anyway, but this was the final nail in the coffin) and I found out that on average my body needs a little over 9 hours of sleep.
And I have made peace with that.
I got better at recognising the early signs of depression, taking look at what’s out of balance (mostly sleep, sometimes stress) and trying to adjust.
I am also seeing a psychiatrist who helps me keep tab on my mental health and we found a medication that works great for me, does not affect my libido or cloud my thoughts and whose dose can be adjusted based on the current need (winter in combination with more stressful times tends to require higher dosage than spring).
Next, I have a mild static tremor in my hands. This seems to increase when I’m stressed or tired but has very little bearing on my life other than eating soup. And frankly, compared to what my grandparents have to deal with, it’s nothing.
This does sometime cause trouble when using the mouse, but again, it’s at the milder end of the spectrum. That said, I am more familiar with the accessibility options at my disposal than most of my peers.
I expect this to worsen over time but I’ll be ready.
One “you have to see it to believe it” thing that I’ve discovered is the intention tremor.
This is a (and I swear I’m not making this up) kind of a tremor that happens after a successful finish of a motion and it is more pronounced the more careful you try to be.
For example, I have a mug of hot tea. I pick it up, take a sip, and put it down on my table. I do this slowly and carefully because I know my hands tend to shake and I don’t want to spill it on my keyboard.
Once the tea is safely put down (success!) I withdraw my hand and as if overwhelmed by the tremendous effort of keeping still, it shakes violently, tipping the mug over.
It is the most ridiculous thing.
And the rest is even milder than that. Even on my non-shot days, I randomly get really tired. All I need to do is lie down for 5 minutes (not sleeping, just be still for a bit) and I’m good as new.
And finally, as a reminder of that first attack four years ago, I regularly get brief (lasting a couple of seconds) periods of vertigo. Nothing serious, but when walking on the stairs I’m always within the reach of a handrail.
The one mildly infuriating thing about all this is that while I’ve been really clumsy my whole life, after doing Aikido and later on climbing, I’d finally managed to train my coordination and body awareness somewhat.
Which means that for a very brief period of time, I got to experience what it felt to be dexterous and move with grace. And then my brain got damaged by my idiotic immune system and it all went back to my clumsy old self.
Alas.
“Medical” “Advice”
There are certain topics where the Dunning-Kruger effect is particularly strong and seems to affect huge portions of the population.
While most people not familiar with the subject matter would not opine on the finer points of quantum chromodynamics, stellar nucleosynthesis, the lifecycle of Adenosine triphosphate or the Brayton cycle, everyone is an expert on politics, religion and health.
Health is such an incredibly complex topic, full of so many pitfalls that it’s a miracle anyone is able to even navigate the field well enough that our life expectancy and quality of life has improved.
But mention that you have a serious disease, a chronic one at that, with tons of vague symptoms and periods where it gets worse and then better and you have the perfect storm for quackery, misinformation and well-intentioned but ultimately harmful advice.
I’ve had someone who got so drunk they jumped out of a window on the second floor, shattering the bones in their legs, spending god knows how long in surgery and physiotherapy and standing in front of me perfectly healed tell me that doctors don’t know anything and can’t ever be trusted.
I’ve been told that MS is just a parasite infection.
I’ve been begged to go to a shady “clinic” and pay exorbitant amount of money to “get my liver balanced”.
I’m supposed to follow an incredibly strict diet because it’s a cure to all maladies.
I’m supposed to infect myself with the hookworms (wait, wasn’t MS supposed to be caused by parasites?)
I’ve had my mum call me that I demand that my doctor set me up with the biological medication, because it’s more effective and with much milder side effects than the more common MS treatments.
That one was not actually bogus. Indeed, I was already on that very medication (“oh but you said how unpleasant the adverse effects are” – yeah, problem is, the other stuff is even worse). The hubris required to come up to a doctor and demand a specific kind of med, though. Unbelievable.
I understand these people (and you too, if you’re tempted to give me medical advice rather than a few kind words) care and genuinely try to help. And I appreciate that. I really do.
Still though: I probably know about all this way more than you do. This probably sounds pigheaded but it is also likely true. I’ve spend disproportionately more time learning about this disease and discussing it with various medical professionals than you reading that one article in is your favourite magazine.
Moreover, I am a very curious person who’s not afraid to dig deep into a topic. Especially when it touches my life so intimately.
So please trust me when I say that this stuff (and all of medicine) is so complicated. So insanely complicated. It is so complicated that the medical universities have the reputation of the most demanding fields of study. It’s so complicated that after the 7 years of absolutely insane amount of information crammed in their heads, these people are still not allowed to practice medicine. They have to spend years following other doctors around and learning on the job.
Contrast that with say programming where a competent person can learn it for 3 months and be hired.
So with apologies, I will not listen to your medical advice. I will not listen to my medical advice (meaning stuff that I’ve learned in my research). In fact, the only person whose medical advice I value and will listen to is that of my doctor. Not any doctor. My doctor.
You may be the leading expert on multiple sclerosis and I will still take my doc’s advice over yours.
First, no one else knows my medical history, has access to my tests and all the other important information that needs to be consulted in addition to the diagnosis.
Second, I’m not smart enough to distinguish genuinely good medical advice from the huge pile of dregs floating everywhere. I don’t think you are either, sorry! But I trust that my doctor is.
I understand that you’re trying to help. I really do, but all it’s doing is causing me undue stress. Which is a triggering factor for the MS attacks. In other words, just hearing your advice is literally making me more sick.
Causes for optimism
There’s a lot to be unhappy about.
However, the disease is under active research and we’re learning new things all the time.
It is possible that a complete cure will be developed in my lifetime. Though if an when that happens is anybody’s guess.
There’s an ongoing research into what happens if you completely destroy the immune system and let it rebuild again. It seems that whatever triggered the misguided reaction gets destroyed with it.
Doing this is of course incredibly dangerous bordering on insanity. But it seems to a promising avenue to explore. Especially for the primary progressive patients (who don’t respond well to current medication).
There’s some intriguing research into the Hygiene hypothesis, suggesting that actually, infecting the patient with the right amount and kind of parasite can teach the immune system to better distinguish the own vs. foreign cells, making it less likely that it will attack the host’s cells.
There are potential drugs that could be taken orally rather than via injections (oh god yes please omg).
So there are grounds for cautious optimism as well. And even if none of it pans out, 2018 is still best year to have MS in the entire history of humankind. Now you can say that for pretty much every disease and most other things too, but that doesn’t make it any less true.
I also live in a place where I have a good medical insurance (the shots alone cost enough that they would ruin me otherwise), a great standard of care – especially when it comes to MS – and access to absolutely amazing medical professionals.
I know people whose experience with the medical profession has been much less stellar, but mine has been excellent.
Read the first section again. Any chain in that looong link could have meant a much later diagnosis (possibly years later).
In addition, I have the most understanding wife, friends, family and colleagues. Thank you all for your support!
<3
