Lab Rat Plot Twist: Zinbryta Pulled Off The Market

I was on the line at the post office when one of my local MS doctors, Sandra Parawira, called to give me the news before I heard about it through the media.
Zinbryta, the MS drug that has staved off my MS attacks for the last 12 years, had just been pulled off the market. A few Zinbryta patients in Germany, and one in Spain, were found to have developed encephalitis. Sandra urged me to come into the office to visit with her on Wednesday. If her concerned tone of voice hadn’t done enough to convey the urgency of the situation, the immediacy of my next appointment in her busy practice surely did.
But was I worried? Not particularly. I have NPR to thank. On my drive to the post office, I’d been listening to an interview with a medical researcher on Science Friday. The researcher, Dr. Kang, was promoting a new book about “cures” throughout history that had done more harm than good. As I listened to Dr. Kang recount Marie Curie’s fondness for the radium which would later kill her, I’d idly wondered which of the drugs or supplements I was currently taking would later be exposed as a toxin. Five minutes later, I got the call that the drug I’ve credited for giving me my life back has been taken off the shelf.
While I have my doubts that a drug I’ve taken safely for 12 years was about to give me encephalitis, I am still seeing this change as an opportunity. Many new players have entered the MS landscape in the 12 years I’ve been on Zinbryta. Perhaps the drug I’m assigned next will improve my life as drastically as this one did.

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The Game of Life with Multiple Sclerosis

I woke up this morning with a great idea for new board game. I’ll call it: The Game of Life with Multiple Sclerosis.
The board game would be in the shape of a circle, the circle of life. There will be three concentric circles within it; three tracks connected by chutes. The outside circle is the longest. At about 45 degrees, the spaces within the circle change color, from Green to Red. Once you hit the Red spaces, you have entered the territory of Relapsing/Remitting Multiple Sclerosis. From now on, every time you roll an odd number in this territory, you have to draw a card from the Symptom Deck. This deck is quite thick. The Symptom Cards include:

Vision Loss (apply blindfold, included. Request assistance from Strong Alliance)
Weakness (roll your next turn with only 1 dice)
Sensory Symptoms (lose 2 Happiness Points)
Pain (lose 10 Happiness Points, lose a turn at forming Weak Alliances)
Bowel problems (lose 100 Pride Points, lose 60 Happiness Points, lose 1 Weak Alliance)
Bladder Problems (lose 10 Pride Points, lose 20 Happiness Points, lose weakest Weak Alliances)
Fatigue (miss a turn)
Loss of Balance (lose 50 Pride Points. One mis-step off the board. Request assistance from Strong Alliance)
Sexual Dysfunction (lose 100 Pride Points, lose the strongest of the Strong Alliance)
Mood Dysfunction (lose 100 Happiness Points, all Pride Points per turn, deduct 10 points from strength of all Alliances)
Cognitive impairment (regain all Pride Points, lose all Alliances)

Are we having fun yet?
As long as you are in the Relapsing/Remitting territory, you can discard each of these Symptom Cards after one turn. Phew. Unless you roll doubles on your next turn. Then you have to keep that Symptom Card until the end of the game.
There is one consolation. A Symptom Card loses half of its power over Happiness and Pride after the initial impact, because the novelty wears off, and the player adjusts.
If you collect too many Symptom Cards, you slide down a chute, and you spiral into the middle circle.
The middle circle is the Secondary Progressive section of the game. All these spaces are blue. As before, you have to collect a new Symptom Cards every time you roll an odd number. The difference is, you can’t discard it when your turn is over. Collect too many Symptom Cards, and you spiral into the inner circle.
The inner circle is the Primary Progressive loop. It’s the smallest circle, with the shortest life span. All these spaces are purple. In this section, we collect a new Symptom Card on every turn. If we roll doubles, the effect of the new Symptom Card doubles.
OK. Who wants to play?
The game I’ve just described is pretty much the landscape I was presented with at my initial diagnosis.
Did I want to play? No way.
To ease my mind, my neurologist presented me with the Drug Cards.
The Drug Cards were pitched as the ultimate accessories in the Game of Life with Multiple Sclerosis. If I rolled a high enough number while in possession of a Drug Card, I could take a pass on collecting a new Symptom card. With a Drug Card, I could potentially skate above the Secondary Progressive and Primary Progressive territories, and win the game.
There was a catch. Each Drug Card comes with Side Effects.
The Drug Cards I was presented with were as follows:

Avonex: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Headaches (deduct 50 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Nausea (deduct 10 Happiness)
General body pain (deduct 100 Happiness)
Fever (deduct 10 Happiness)

Betaseron: 10 Happiness Points for taking control minus 1 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:

Skin reactions at the injection site (deduct 1 Happiness)
Flu-like symptoms (deduct 100 Happiness)
Weakness (deduct 50 Happiness)
Headaches (deduct 50 Happiness)
Pain (deduct 100 Happiness)
Muscle pain (deduct 100 Happiness)
Insomnia (deduct 50 Happiness)

Copaxone: 10 Happiness Points for taking control minus 2 Happiness Points per shot for discomfort. Side Effects? Roll the dice. Collect:
Pain (deduct 100 Happiness)
Redness (deduct 10 Pride)
Infection (deduct 10 Pride)
Inflammation (deduct 10 Pride)
Itching (deduct 10 Happiness)

Once you choose a drug, you gain 100 Pride Points. You also gain Side Effects. With each Side Effect, you lose 10 Happiness Points and 10 Pride Points. Once you’ve earned your Side Effects, you roll the dice to see how effective your Drug Card really is. The higher the Effectiveness roll, the higher the likelihood you won’t have to draw a Symptom Card, and the higher the Happiness Points will be. Unfortunately, after a few rolls, you find you can’t roll two dice anymore. You roll one. Soon you discover your Drug Card isn’t that effective. You find yourself drawing from the Symptom Card deck.

Spoiler Alert: I’ll tell what I’ve discovered about the Drug Cards I was dealt in the early years. They are all useless.

This is only one of the many startling revelations you will encounter in the Game of Life with MS.

You discover at some point in the game that the Pride Points are worse than useless. Pride Points detract from Happiness. You discover Weak Alliances are also potentially useless. You can convert Weak Alliances into Strong Alliances, but only if you play your cards right.

For every five cards you are dealt, good or bad, you gain access to one Wisdom Card. Those Wisdom Cards come in handy. Wisdom Cards become your currency. You’ll need some currency, because all your money cards fly out the window after the Drugs. If you accumulate a big pile of Wisdom cards, you can share them with other players when they hit rough spots, thereby creating more Alliances. There will be times when you will need Alliances; you never know when you might draw a Vision Loss Card, and have to wear the blindfold, or a Balance Loss Card, and need a nudge back on the board. Alliances give you Happiness Points. When your Alliances help you out, they get Happiness Points, too. The longer you are in the Game, the stronger your Alliances become. Turns out, you can keep on earning Alliances from any territory on the board, though the smaller the spiral, the harder it is to gain a Weak Alliance. But once you gain one, there is also more potential for it to form into a Strong Alliance. It all depends on how many Wisdom Cards you and the other player have accumulated between you.
Those Wisdom Cards, and those Strong Alliances, they give you Happiness Points. Oddly enough, I’m starting to learn you could potentially wind up with more Happiness Points in the purple section, Primary Progressive, than some players starting off in the green. But that’s only if you play your cards right.

What kind of game is Life with Multiple Sclerosis? At first glance, it’s a game of chance. But the longer you are in it, the more you learn it is also a game of endurance.

Would I play the game of Life with Multiple Sclerosis if I didn’t have to? Hell, no. But I’m not ready to fold.

Look here. I finished another blog entry. I earned another Happiness Point. I hope you did, too. This game’s not over yet.

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