Reality Check

Early this morning, Dr. Z. said softly, “You have a very severe case of MS.” Dr. Z. is the most dapper neurologist in town. He was wearing yellow wool pants and a pastel striped tie and fancy orange loafers, the kind with the little pinholes. I’d dressed up in a floral dress and a purple scarf and a white summer sweater with pearly buttons. My hair was back behind a perky blue and white polka dot hair-band. The healthy façade was futile. We were looking at the MRI scans of the brain behind the hairband.

I couldn’t help but notice his use of present tense. I always say, “I used to have a severe case of MS.” Because my multiple sclerosis has been fairly well controlled since I first went an earlier formulation of the drug that is now being released as Zinbryta. I am able to live a full life; I do meaningful work, I exercise, I spend lots of time with friends and family.

“You have scores of lesions throughout your brain, and significant brain atrophy.”

It wasn’t news that I had a lot of brain lesions. For over two decades, MRI’s have revealed those lesions festooned throughout my brain with the all the density and regularity of Christmas tree lights.

But brain atrophy?

No neurologist had ever said the word, “atrophy.” Most doctors have emphasized the positive—how I present in person rather than how I present via MRI. I’m used to hearing, “You look great!” from neurologists and lay people alike.

Please don’t conclude that Dr. Z. was being negative. He wasn’t. He was being honest. Because I’d forced him.

What kind of patient goes on experimental drugs? The kind of patient who likes to experiment. And since Zinbryta is officially on the market, and I am no longer taking it for research, I’ve been restless to see what new way I could approach my disease.

I’d been telling Dr. Z. about how once, while at the NIH in Baltimore, I’d met another MS patient who’d also been on the original formulation of Zinbryta, way back in the days when it was delivered monthly through IV infusion instead of through a slender needle. As we two lab rats hung out by the MRI machines, we’d compared notes on the two formulations, and had agreed that while both versions of the medication were effective in stopping the progression of the disease, the earlier version had felt like it had shrunk the MS activity to insignificance.

Now I wanted to know, was there any chance Dr. Z. could prescribe the infusion?

There was not.

I then asked about the diametric opposite treatment extreme; some people I admired were treating their MS with diet and exercise alone. I have a great diet and exercise regime; was it possible that my lifestyle was responsible for my apparent good health? Could I possibly experiment with a medication vacation, once my supply of Zinbryta ran out?

And that’s when Dr. Z. said gently, “You don’t have any brain left to experiment with.”

Sometimes the truth hurts, at least for a moment. But in my experience, the truth is always more manageable than any lie. I thanked him. It was actually comforting to hear confirmation of what I feel, and conceal, every day. That every day I perform a thousand little miracles just to make it through.

Did I cry? Yes. In the elevator, a little. And one big sob in the car. But I was calm through the appointment.

Dr. Z. observed that medications alone were never sufficient for MS treatment. The patients he’d had on the best medication available to him still got MS relapses if they continued to make poor lifestyle choices.

We agreed that I had to stick to good lifestyle choices…and to the good medication that has worked for me thus far. I have (present tense) a very severe case of MS. Thanks to Zinbryta, I also have the luxury to expect that the next time I see him will be for a follow up appointment in three months, and not in a state of emergency during the MS relapse I can’t afford to endure.

That Which Doesn’t Kill You

December 29, 2010
Every day with relapsing/remitting MS contains a bit of suspense. I never know for sure what I’ll be up against.
Take this morning’s dog walk, for instance. For the past two weeks, my husband has been doing most of the dog walking. I’ve been fatigued; I imagine it’s because of holiday travel.

Today is my husband’s first day back at work, so this morning I decided to resume dog-walking duty. Problem was, my legs didn’t feel all that reliable. They were just a tad bit more tingly, a tad bit more wobbly, than usual. I wasn’t 100% certain they would hold up for the duration of the walk. But then again, I wasn’t 100% certain they would fail me, either. I hate to lose the opportunity to breathe fresh air and get some exercise. I hedged my bet by inviting our 14-year-old son Henry along as back up. He agreed to take the leash. This was brave. How brave? Read on.
There are a few extenuating factors I have to watch out for on winter walks. If I get too cold, my muscles tend to seize up and spasm. But here’s the rub: if I get too hot, my MS symptoms go into overdrive.
I found myself lagging behind the dog and the boy right from the start. My legs felt heavy, as if the heel of each boot contained a five pound weight. The dog had a good deal of business to attend to. I was able to stay within half a block due to their frequent stops. Both the boy and the dog kept looking back. I tried to hustle. The fastest tempo I could muster was a shuffle. Within a few blocks, my boots started to feel heavier, like they weighed twenty pounds each. I knew better than to take off my boots. I took off my hat.

I can’t afford to get a hot head. Multiple Sclerosis is an autoimmune disease in which renegade T-cells from my own immune system have attacked the insulating layer (myelin) around the nerves in my brain and spinal cord. When I overheat, my poorly insulated neural signals tend to misfire. This can lead to any number of complications.

I once lost most of the vision in my left eye during a dog walk. My vision gradually returned, but only after I’d completely freaked out…and completely cooled down. At the time, I hadn’t had an explanation for the world going grey. I thought this was the beginning of the rest of my life as a semi-blind person.

Today I know what to expect when I overheat…sort of. I can expect to get symptomatic. And I can expect the symptoms to be transient. I don’t get to pick which symptoms will arise.

My legs were getting more tingly, and more wobbly, block by block. Shortly after I decided we should turn around, my hips began to swivel madly. Then my knees began to buckle. My agency over my body was slipping away. I grabbed hold of my boy’s extended arm. Henry handed me the leash, in hopes our hundred pound lab mix would pull me forward.

No such luck. In wintry weather, the dog has learned to walk slowly, to match my pace along the slipperier sidewalks.
I pitched forward. Pitched backward. Getting home was going to be tricky.

My son said, “You shouldn’t have walked.”

“I need the exercise.”

“This isn’t exercise.” He had a point. We were inching along. “You’re only hurting yourself.”

At least I knew for sure I was reaching my full potential for the day. Which is kind of athletic, in a sick kind of way.
I thanked my son for assisting me in this adventure. But he didn’t see it as an adventure; to him it’s an ordeal. He doesn’t care if his mom has reached her full potential for the day. He just wants his mom to be safe and intact.

I try to assure him that what he’s witnessing isn’t a progression of my MS; it’s just a flare-up of symptoms from damage done long ago. There’s no way to prove that to him, though. Not until the next MRI.

I have faith my medication will prevent another full-blown relapse. Faith my family will stick by me even when I’m wobbly. And so I venture out, and trust that somehow there will always be a way for me to make it back home.