woman on office floor with glasses askew and phone in hand

MS Drugs or Diet?


She had blanked out when I said I’d been treating my condition through diet. I may as well have said I was treating myself with the rare purple ink of an octopus.

Her grey hair was wavy. Thick glasses shielded her brown, incredulous eyes. She had the clean, lightly dimpled skin of an elegant woman, seventy-plus years of age — a foremost expert in my condition.

“The treatments are very good now, you know. There have been a lot of advances.”

Over the next half hour, I gave a muddled health history.

I was in the Army Reserve. The first attack was after a course. It felt like I was still wearing the enormous army pack. It was so heavy it had to be clipped around my rib cage. Like wearing a corset plugged into something electrical. When I tipped my head forward, my fingers buzzed.

My health history had been a muddle of dates and inept descriptions of symptoms along a potted timeline. It was hard to remember exactly what some of them felt like. There was a grey area at the ten-year mark, when attacks came thick and fast, each uniquely hideous.

I never kept an ‘illness’ diary. I scrambled to connect dates and years to the attacks.

Was it numb? Or pins and needles? It couldn’t be both.

“Uh?”

She thought I was an idiot. I felt like one.

I racked my brains. Where did I work at the time? Who was I dating? What was happening in politics when I fell off my friend’s deck? Who was the prime minister when I felt like I was sailing in the Sydney-to-Hobart? These were the clues that held the years and months.

Suppressed anxiety was bubbling at the back of my mind. I couldn’t miss the train. There was a three-hour ride back home.

“Stand up, please. Feet together.”

I attempted standing with my feet together and eyes closed. Wavered. She stopped me before I fell. On a narrow table upholstered in a plain medical beige, I lay down.

“Is this sharp or blunt?”

I couldn’t feel anything.

She pricked higher on my legs, arms, and collarbone.

“Sharp. Blunt. Blunt. Sharp, I think. Not sure.”

“In this day and age it’s hard to believe anyone would not be on medication,” The comment hung in the air like a net.

I put my shoes on again, awkwardly. She shuffled to the other side of the room and collected some booklets from a stand. The reception lights had been turned off. There was no one else in the building. It was after six pm and winter. Through the window, I could see it was dark.

She returned and put two thick booklets in my lap. Sat down heavily, imperceptibly sighing, like she’d dragged something heavy back across the carpet. Artillery.

“We’re dealing with a lot of damage,” she said.

I glanced down. The titles had familiar bone-chilling names. One cover showed two attractive models laughing in a kitchen. Like this was a fun secret.

As a medical writer and a medical marketer, I knew these were the two most effective treatments for MS. And also the most dangerous.

“If you qualify.”

I was stunned.

“Why weren’t you on any medication?” She asked pointedly as I packed my backpack.

“Because I was well,” I answered simply.

I didn’t go into all the ways I could now do things I hadn’t been able to do ten years ago. Like running. Like working a high-stress, high-thinking job. Like climbing the tall steps to Fortress 12 of the Great Wall of China.

Where it all went wrong

On my way out of that treatment room, I went to the toilet. The lights didn’t illuminate the entire room, just my sad figure draped in shadows. I looked at myself. I didn’t look like me. Or feel like me. My clothes strained to go around my vast stomach.

I had eaten mindlessly, stuffing myself out of stress. Using food as a not very effective anesthetic. Eating mindlessly. I ate whatever was pushed through the garage door, where I sat tethered to a screen of constant beeping notifications, all day long, and half the night.

Butter. Milk chocolate. Cream in a birthday cake. Copious amounts of cheesy pizza. McDonald’s fries. McDonald’s filet-o-fish. Things I hadn’t eaten since I was a kid. Things I had easily surrendered in adolescence.

Why had I done it? Why had I abandoned a perfectly good diet for what most people ate?

On reflection, I was testing things. Without any scientific method.

Firstly, I was testing whether I even had multiple sclerosis. Because just when I was statistically likely to develop progressive MS, mine started reversing.

Secondly, whether dairy would trigger an MS flareup. And what did an MS attack even feel like? I had forgotten how bad it could be.

On a practical level, I lost control of what I ate because I stopped cooking. And I stopped cooking because I worked 15-hour days with no breaks. For a national nonprofit. I served every state and every time zone. Like me, it was descending into crisis.


This year is my anniversary. Twenty-five years with multiple sclerosis.

No, this is not a sob story. I’m happy! And I’m perfectly okay with having this chronic condition. I don’t believe there is anything wrong with me.

It’s not that I’m in denial. I just don’t identify as my illness. And I don’t think anyone else should either. And although it’s incurable now, we don’t need to cure it to make it irrelevant.

I’d say there were as many benefits to having MS as drawbacks. Why?

Because having MS forces us to really look after ourselves. I have learned from other people what works to stop MS flare-ups, what soothes inflammation, and what eventually, starts reversing the damage. They are straightforward biological processes.

Having MS forces me to live the best life. To me, this means not sweating the small stuff. Working with passion and intention. Being a good person. Being kind. Living with grace and mindful simplicity. Eating the healthiest food.

There are other options, however. You can have a balloon surgically implanted in your brain to increase blood flow. You can bomb yourself with chemotherapy drugs and then introduce stem cells (HSCT). Or you can wait for a cure.

To stop my MS attacks for over a decade, I tried a special diet. Then I modified it to make it work even better for me. After a while, I hadn’t felt that good since I was a youth.

There’s something else that having an incurable chronic illness has shown me. Medicine is decades behind science.

As a newly diagnosed 24-year-old, I received some patently bad advice. Exercise is bad for you. Myelin damage is irreversible. Both were wrong.

Exercise is neuroprotective. It also feels great. It gives you a high. The neurochemical cascade of serotonin, endorphins, and norepinephrine is natural ecstasy. Exercise is good for you. Fortunately, the advice has now changed. 

Myelin does repair itself. It simply needs time and nutritive support, like tending a damaged garden. I have my own body as proof. My fingers no longer buzz when I tip my head forward. I’m not wearing an electrified corset. I have lived experience. My body wants to be well. It strives to be.

So much is known about MS. But so little is understood.

What is multiple sclerosis?

Its name is a description of the symptoms: many scars. There is no known cure. It is progressive and degenerative.

It’s a young disease. It is a leading cause of non-traumatic neurological disability in young adults. The average age of diagnosis in Australia is 33 years. MS is also young in that it was only recently identified as a disease.

Attacks (flareups) interrupt the smooth processing of signals from the brain and spinal cord. What that feels like varies. Vision problems are typical. Balance and coordination, other more sensory issues like pins and needles. Difficulty with memory, decision-making, and emotional problems like depression, and anxiety.

There’s also fatigue. That’s the most common symptom. The brain has to form new ways of doing things around damaged areas of the brain. That’s exhausting, but it gets there. The brain re-patches around the damaged myelin and works out another way.


The treatment dilemma

It took me weeks to wrestle with the decision about whether to suppress my immune system or not. Would I take a drug (a poison) that might hurt me? A treatment regime that involved suppressing part of my blood (my B cells) that has the job of killing cancer cells among other things?

I walked with a psychologist friend through the bush.

“I’d only take a chemotherapy drug if I absolutely had to,” she’d conceded. That’s what I thought too.

My instinct and intuition was not to take drugs. Even as a medical writer, I knew how deleterious they could be. I’d worked in HIV and viral hepatitis. I knew early treatment was better. But I didn’t believe the same was necessarily true for MS. 

The first generation of MS drugs had serious side effects. The benefit was that they reduced the frequency and severity of attacks by one-third. And the cost?

Flu-like symptoms. Fatigue. Lethargy. Trouble sleeping. Anxiety. Depression. Suicide ideation. I didn’t need an economics degree to see the cost-to-benefit ratio was unsatisfactory.

I spoke to an MS nurse. Clarified points about the data. Mentioned an article by a doctor in the Lancet. Mentioned the FDA’s warning letter to Teva Pharmaceuticals for misleading product claims. Still, I couldn’t decide.


Recovering again

Over a few weeks, my flareup healed. I could walk easily again. I started to get in shape. With no equipment, I started doing twenty ‘boy-style’ pushups every morning. Every day I meditated and ate the rainbow.

Fruit and vegetables. Anthocyanins. Betacarotene. Vitamin A, B, C. Mushrooms. Nuts and seeds. Whole and healthy food. God’s supermarket. No chemicals. No meat. No dairy.

I went back to the food medicine diet. The one that had worked for me until I stopped following it.


I strode into the treatment room, my face a cautious smile.

“It’s like seeing a different person,” the neurologist smiled. Her shirt was a pattern of grey and silver shapes, like salmon skin. Morning light shone through the windows and bounced off her shimmering sleeve.

“I have your MRI scans,” she said as I sat down. I braced myself for a horror show.

“They’re actually really good!”

I raised my eyebrows.

“It’s likely you haven’t had any disability progression for the last ten years. I recall you saying you had felt well.”

I couldn’t help but smile even wider. In the intervening two months between this appointment and the previous one, I’d shifted a few pounds and was feeling stronger. I was back again. Dani was back!

“Shoes off. Stand up. We’ll do the EDSS.”

The EDSS is the expanded disability status scale, which consists of a series of basic physical and neurological tests. They include nose-to-finger quick responses and walking across the room heel-to-toe as fast as possible. I sailed through the tests and practically ran across the room.

“Now,” she leaned toward me with her hands on her thighs. 

“Have you had a Covid vaccination?”

“I’ve had three of them. The double and the booster.”

Her eyes became larger. I could see she had me pegged as an anti-vaxxer.

“Good!”

She went through a checklist on her desk. “Vitamin B, cholesterol, Vitamin D, calcium, iron. Perfect, perfect, perfect. Everything is all perfectly normal.”

Finally, she looked up at me. It was crunch time.

“Have you thought about any of the disease-modifying drugs?”

“Yes,” I answered.

In fact, I had thought about them almost obsessively. I’d researched medical journals. I’d read about the benefits and risks. The side effects. I’d done meditation and prayer, even sought fruitless help in the Reddit rabbit hole. There was a Ph.D. worth of research on my computer supporting that I was making the right decision.

“I’ve decided to hedge my bets,” I tell her. I’m in control of this session now.

“I’ve gone back on my food medicine diet, “ I continued.

“But I’ll also take a drug as well. And I’d prefer this one.” 

I pointed to the booklet I had brought back with me. “I’m willing to try it for six months and see how it goes.”

She nodded for a while like she wasn’t sure what to say. I waited for some kind of objection. 

“I strongly agree with your decision,” she said. 

“Diet is important. And so is the medication.” 

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