You Really Don’t Want This Diagnosis, Do You?

In 2005, I almost died after an easy laparoscopic gallbladder operation. The doctor made mistakes (internal bleeding), the OR team made mistakes (pinched a nerve in my left leg), and the nurse made a huge mistake (didn’t hook up my IV right and I bleed out on the floor). I’m not sure to this day why they didn’t give me blood transfusions because I fell way below transfusion level. Maybe it had to do with admitting they had made a mistake.

I started having seizures and developed a systemic infection with a fever of 103 degrees F. I also developed other health issues. I eventually ended up seeing a neurologist. I scheduled an appointment to get the results of my MRI so that my husband would be with me. I had to go into his office for some other reason and his staff immediately told me I had Multiple Sclerosis (MS). They had me on the table, ready to inject me with Interferon before I knew what was happening. I refused.

I got several other opinions. If you don’t know, MS is not a conclusive diagnosis. Two doctors said I had MS, three said they weren’t sure. The doctor I trusted most told me it didn’t matter at that point. He said to hold out as long as I could without treatment because it is expensive and can make things worse. I took his advice.

Exactly ten years later, I started having symptoms on the left side of my head, including extreme pain and pressure at the base of the skull, ringing in the ear, eye pain, cognitive issues and frontal lobe pain. I ended up seeing another neurologist and having several MRIs done.

At our next appointment, she said, “I think you have MS, but that isn’t causing your current symptoms.”

“Let’s just focus on my head issue.”

She turned and looked at me. “You really don’t want this diagnosis, do you?”

I stared at her and blinked a few times. Seriously? Would anyone want a diagnosis of MS? Did she think I should be jumping for joy? Frankly, my head hurt too much to respond to that question.

I said, “I thought it wasn’t a conclusive test?”

“You have a lot of new lesions in your brain and on your spine. Let’s get things started.”

On the way home, my mind kept asking me if I was ready for this. I was, and had been, in a lot of pain. Could I take more? Or, had I had enough? Would I just be making things worse by going on medication?

The phone rang as I came through the door.

“Is this Cindy Christiansen?”

“Yes.”

“We would like to come out and get your trained on your first injection.”

Really? That fast? “I need to think about this first.”

I hang up, my mind reeling and my hands tingling with confusion. The phone rang again. It was my doctor.

“I’ve talked with the radiologist that read your MRIs,” she said. “I’ve decided you don’t have MS.”

“But the company just called me to schedule the in-home—”

“I’ve cancelled that.”

I hung up, bewildered and numb. So, if I am not a willing to make a rushed decision, I don’t have MS? I guess my doctor was right.