Disastrous Diagnosis: Part 1 of a Patient Perspective Series

In MS, Multiple Sclerosis on January 25, 2011 at 8:46 am

Being a chronically-ill patient for the past year has taught me something about the medical establishment–it’s extremely flawed. In a several-part series I’ll share my patient perspective as I wind through the convoluted maze of medical tests and treatments. With this series, I hope to shed light on the experiences sick individuals endure, in order to encourage more compassion and patience in medical professionals. Every doctor should get sick, just to see what it’s like to be a patient.

At 35 years old, I had a complete physical and I remember exactly what the doctor said: “You’re an extremely healthy woman. You’ll live to a ripe old age.” I even joked with him, “Unless I get run over by a truck first.”

Ouch. Why did I say that?

At 39, the 18-wheeler hit.

That Halloween, I sprained my ankle while trick-or-treating with my kids.

The next morning, I couldn’t feel my foot.

I called my orthopedist. He had operated on my ankle when I broke it figure skating several years prior. I still had a few screws in my tibia, so I thought maybe a nerve got caught in the hardware. Or something related to the old injury.

The receptionist scoffed when I asked to be seen the following day. “I can get you an appointment in two weeks,” she said.

“But you don’t understand,” I moaned. “I. Can’t. Feel. My. Foot.”

“Two weeks at 12:45. Does that work or not?”

I hung up.

I figured it will just go away—or rather, come back—in a few days.

But a few days later I sprained my ankle again. The next morning, I couldn’t feel my other foot—the foot I didn’t even injure. I knew something was very wrong.

I tried to ignore the problem. Deny it. I went about my day as usual. I took my daughter to school. I shopped for groceries. I worked. I cooked dinner. Both feet were still numb.

My fear and frustration came to a head on Thanksgiving. I was noticeably limping and I had been in discomfort for a few weeks. I wasn’t sleeping well. And with the numbness also came pain, which no one could understand. “If it’s numb, how can it be painful?” my husband innocently asked.

I exploded.

I had been tossing butter and pasta for my children, since neither ate turkey. I threw the bowls across the kitchen, broken ceramic and spaghetti everywhere—on the tile, the cabinets, the fridge. My poor family looked terrified. Little did they know I was terrified enough for all of us.

I made the mistake of going to the first neurologist who answered the phone. But maybe I had no choice. The first two offices did not return my calls.

By early December, added to the numbness and pain in my feet was difficulty urinating, constipation, blurred vision and weakness after a hot bath. The doctor I saw should have immediately seen the symptoms of Multiple Sclerosis. He mentioned every other problem first—small-tissue nerve damage, spinal cord trauma and chiari malformation.

He ordered MRIs of the brain and c-spine (neck). I was directed to an open MRI facility so I could tilt my head to my chest during the scan and hopefully recreate the electric buzzing sensation that moved through my arms when I lowered my head. (Another tell-tale MS symptom.)

My doctor neglected to tell me I needed a blood test prior to the MRI scan. I traveled an hour to the radiology office only to be sent home with an appointment for the following week.

The first MRIs were inconclusive. I later learned this was because the open MRI is not very strong. The results specifically said, “demyelinization cannot be ruled out” but my doctor decided to ignore that notation on the report. He never mentioned it. All he had to do was send me for a second MRI on a stronger machine. Instead, I had more tests in his office.

I was poked and prodded with electrified needles which determined my nerve roots were functioning normally. The doctor found some minor carpal tunnel issues, but as a writer, I expected that. Otherwise, he was stymied.

I pleaded for some kind of answer. I told him I had two young daughters whom I could no longer walk to school. “Why can’t you walk them to school?” he asked. I was incredulous. “I told you on day one—I cannot feel my feet!” I told him I had been an athlete. An avid tennis player. A competitive figure skater. I wanted to coach my daughter’s soccer team. I began to cry. “I just want to run around with my kids,” I sobbed.

“I’ll come back when you calm down,” he said, and walked out of the room.

It took two months for the doctor to finally order a stronger brain MRI, and only at my insistence, after a friend read my original MRI report with the “demyelinization” note.

The next day, the doctor called. He said, “Well, just in case this is MS I want to schedule you for a spinal tap and a course of IV steroids.”

I was baffled. “I don’t understand,” I said. “If it’s not MS, then what is it?”

“Well,” he conceded, “I think it is MS.”

This neurologist’s ultra-conservative methods wasted two months and thousands of dollars in inadequate, arguably unnecessary tests. I received 5 days of IV steroids exactly three months after my symptoms first manifested. The steroids did nothing to ameliorate my suffering. But, my hair started falling out in clumps two months later.

Next up in this series…
Am I a Disease or a Person?

Pecans’ Powerful Nutritional Punch (plus a recipe)

In MS, Multiple Sclerosis, Recipes on June 16, 2010 at 9:14 pm

Eating whole, unprocessed foods is a smart idea for those of us with MS. Did you know that pecans provide a powerful nutritional punch to your diet? Studies show they can protect the nervous system, reduce cholesterol and prevent heart disease. (Too bad they don’t cure MS.)

Pecans contain more than 19 vitamins and minerals, including vitamin A, vitamin E, folic acid, calcium, magnesium, phosphorus, potassium, several B vitamins and zinc. They contain very little saturated fat.

Pecans are great on their own as a snack, but how can you incorporate them into a meal?

That’s easy. It’s time for pecan sauce!

3/4 cup pecans
1 cup water
1/2 tsp salt

Toast 3/4 cup pecans in a toaster oven. You’ll know they’re done when they’re fragrant. (Keep an eye on them. Shouldn’t be more than 2 or 3 minutes on a middle toast setting.)

In a small food processor (like the Cuisinart Mini-Prep), grind the nuts until they form a nut butter. (You’ll need to scrape down the sides occasionally.) Then, while still processing, slowly pour 1 cup water through the holes in the processor lid. Add 1/2 tsp salt and process a few more seconds.

That’s the sauce.

Pecan sauce is especially good with mushrooms. It tastes like the best cream of mushroom sauce you’ve ever had, except there’s not one drop of cream in it!

Sautee 1 or 2 chopped shallots in a dab of your preferred cooking oil until translucent, then add one pint of sliced white button mushrooms. Sautee until the mushrooms are slightly browned and have released some of their moisture. Add the pecan sauce to the pan and bring to a simmer.

Guess what? You’re done. (That was easy!)

The sauce can be ladled over rice with vegetables, chicken, turkey, or lean pork. You’ll be licking the plate clean, I guarantee it!

Got any good pecan recipes to share?

How to Talk to Someone with MS, Part 2

In MS, Multiple Sclerosis on June 16, 2010 at 6:08 pm

“You’d never know she had it!”

How many times have you heard that phrase in relation to someone with MS? I’m going on a million…and counting. Every time I encounter someone new who learns that I have MS, they say, “Oh, my sister-in-law has MS and you’d never know it.” They may even continue with, “And you look good, too.”

Why do they say that?

Well, most people do not know what to say to someone who is chronically ill, so you have to excuse them. They mean well, but they have no idea what an MS patient endures.

MS is sometimes an invisible disease. Other people cannot see pain, fatigue, blurred vision, or loss of memory. If you’re not walking with a cane or in a wheelchair, everyone may assume you’re fine. So although they may say “you’d never know she had it,” they need to be reassured that of course, the person with MS definitely knows they have it.

External appearance has nothing to do with the internal symptoms we face or the daily accommodations we make in order to lead a fulfilling life–pacing ourselves because of fatigue, staying cool in hot weather, taking injections, altering our diet. Having MS means your life is never the same again. That doesn’t mean that life isn’t good, it just means that life becomes different.

In MS and Your Feelings, Allison Shadday writes that many people don’t know how to respond kindly to news of an illness, so they instinctively say the first thing that comes to mind. But hearing that you or another with MS “looks good” actually demoralizes our experience. If we are repeatedly told that we look good, we may feel that speaking about our symptoms is just complaining, and we may cease to understand how we feel about being sick.

If I look good shouldn’t I feel good? Why am I complaining? Maybe I shouldn’t say anything at all.

Acknowledging your symptoms is of great importance. You must understand your physical limitations and emotional pain regarding being ill and communicate that effectively with friends, loved ones, caregivers and doctors. If there’s no problem, there’s no solution, right?

So perhaps when someone says “you’d never know you had it!” you can remind them that “well I know!” and steer the conversation toward a place that’s comfortable for you. If you need help, ask for it. No one will know unless you say so. After all, you look good!