And Now Fibromyalagia

This November posting frenzy would not be complete without an update on my wife.

The medical weirdness started when she was pregnant with a severe rash that covered her entire body but not her face. She described it as intensely itchy. To me, it looked like an episode of Star Trek when one of the "Away Team" contracts an alien virus and morphs into another humanoid species. There was no clear definitive diagnosis on that -- just some sort of vague reference to "pregnancy rash" and that it only happens once. It reoccurred four months later, although not a severe.

The next episode happened in 2006. Both parotid glands swelled. Again the medical community was stumped. One doctor even suggested that it was a stone, forgetting (or ignoring) the fact that both sides of her face were affected. Antibiotics were prescribed and taken with no improvement. Then it was determined to be viral, so treatment involved alleviating the pain. Then when she complained of dry mouth, a doctor suspected Sjögren’s Syndrome and prescribed prednisone. The symptoms went away but came back. The test for Sjögren’s Syndrome was negative.

We're still dealing with the after effects of the next event, the attack of Transverse Myelitis. It started when she woke me up to tell me that she couldn't pee. She was released from hospital four weeks later barely able to walk and with severe pain.

Fed up with allopathic medicine, we consulted with a Naturopathic Doctor who made a diagnosis of Hashimoto's Thyroiditis. Although he couldn't treat her pain, he suggested a variety of supplements, two of which were NatureThroid, non-synthetic thyroid extract, and Isocort, a non-synthetic adrenal extract. The supplements had a terrific effect on her mood.

Still, we needed pain relief so we stuck with the neurologist at the hospital that she was initially treated in. Concerned about leg weakness, they mentioned spinal stenosis and MS.


Well, I'm getting angry and upset again. Suffice it to say, some more bumbling doctors made some more diagnoses. And the latest of these is fibromyalgia. This diagnosis was based on tenderness of all the pressure points and a negative test result for anything else. (Thank goodness that she never got a false positive for Lyme disease as I did. Otherwise, she'd get a two-week course of antibiotics and a pronouncement of being cured.)

I think her fibromyalgia is due to improperly managed pain. She was given too few quick-acting opioid pills and then left with no coverage at night. Thus she has been suffering from insufficient sleep for several months.

In his 2004 book, "Arthritis: Fight it with The Blood Type Diet Dr. Peter D'Adamo writes about people with type A blood, such as my wife,

One of the effects of high cortisol is a disruption of the sleep cycle, which, in turn, places extra stress on the body. Studies show that many people with arthritic conditions such as fibromyalgia experience a type of sleep disturbance called alpha delta sleep disorder. People with alpha delta sleep disorder experience a disruption in sleep patterns. They don't obtain enough deep sleep -- the phase in which muscles are repaired.

Anyway, even though this is yet another incurable disease that no one understands, maybe it will at least allow my wife to get better pain management.

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.