Myelitis Manifestation

It was September 2006. My wife woke me at about 1:30am. "I have to pee, but I can't." I didn't think much of it and drifted back to sleep.

But I woke up shortly after and saw that she was not in bed. When I checked on her, she still couldn't pee, but she said also her legs felt a bit heavy. We sat around wondering who to call to sit with our daughter while we went to the ER. Could we wait until morning, after the bus picked our daughter up?

This was serious, and I decided to call our church's pastor. At about 3:00am. Both he and his wife picked up the phone at the same time, and when I addressed the Pastor, I heard him say to his wife, "I'll handle it."

And he did. He came to the house and sat in the kitchen while I drove my wife to the ER.

Once there, it seemed like glaciers rose and melted before we actually had a doctor attend to her. By then her feet were mostly numb. He did not exude much confidence, and muttered something to himself about Guillain-Barré and Myasthenia Gravis. He let her try going to the bathroom before inserting the catheter.

Meanwhile, transport to the MRI was waiting.

The collection bag filled to an amazing 1 liter. And then we found out that she was being admitted. She was just starting to experience burning pain from light touch on her legs. It was an evolving and worsening condition. That's when I went home to do our daughter's morning routine.

When I got back, I found her in the oncology ward hooked up to intravenous steroids, entertaining Neurologists and Rheumatologists that had one thing in common -- a fascination with bizarre and unusual medical cases. Her legs were tight with spasms and filled with pain. Even the weight of the sheet sent blasts of fire into them. They severely underestimated the amount of pain control that she required. They also offered little in the way of physical therapy. However, the doctors viewed the leg spasms as a great thing -- she might possibly walk again!

The diagnosis was Idiopathic Transverse Myelitis, which, apparently affects only 1 to 5 per million people each year. "Myelitis" is inflammation of the spinal cord. "Transverse" defines the location of the inflammation and its effect on the body. "Idiopathic" means that despite an MRI, spinal tap, blood tests, weird eye test and a nuclear medicine scan, the doctor has no friggin' clue about what caused the condition. Hence, IDIOpaThic. Their guess was that the flu-like virus she had tricked her immune system into attacking the tissue in the spinal cord. Why was she put in the cancer ward? I think it's because it was the ward with the best infection control practices. And being on a high dose of steroids, her system was vulnerable to infection.

She stayed an agonizing seven days in that ward, and was transferred to a hospital that specialized in rehabilitation of spinal cord injuries. The transfer could not be done before my wife was switched from intravenous to oral pain meds. She stayed in that hospital for three weeks, leaving behind the catheter and gaining the ability to shuffle walk with a walker.

We've crossed the two year mark. My wife can walk just as well as before on a good day. We have learned a bit about this uninvited guest:

• During winter, pain increases and mobility decreases.
• Switching to a new pain med helps for a short time, but quickly becomes less effective.
• Doctors do not like complicated cases.

Life is short and unpredictable. Seize the day before it is seized from you.