Tuesday, March 18, 2014

They will not look!


"They can if they look. But they will not look!"

Ten minutes later, I am alone in the lobby, attempting to focus my thoughts. My task here is straightforward. Has Paul been failed by his medics, or is he crazy? Are these people infested with uncommon parasites or uncommon beliefs?

"For people to say you're delusional is very anxiety-provoking. Then they get depressed. Who wouldn't? Hello!"

"In my experience, Morgellons patients are doing the best they can to make sense of symptoms that are real. These people have been maltreated by the medical establishment. And you're very welcome to quote me on that. They're suffering from a chronic itch disorder that's undiagnosed."

"To your brain, it's exactly the same. So you need to look at what's going on with their nerves. Unfortunately, what can happen is a dermatologist fails to find an explanation and jumps to a psychiatric one."

"It's not up to some primary-care physician to conclude that a patient has a major psychiatric disorder."

Nick admits that he was only able to have his samples examined by experts because he was acting as his own doctor. And if that hadn't happened, he says, "I would have received exactly the same treatment that he did. Delusions of parasitosis."

"Paul had the impression that his doctors were working from a kind of checklist," I say, "and if his symptoms weren't on it, he was just dismissed as crazy."

"I'm afraid that's true," says Nick. "If none of the medical models fit, they're dismissed. The immediate conclusion is "medically unexplained symptom", which is a euphemism for nuts. It's a sad indictment of my own profession but I've experienced it first-hand. There used to be a culture of getting to the bottom of the problem. There isn't that now. I find that really sad."

* * *

Another group of patients who suffer the same attitudes as CFS patients: if our science isn't up to finding it, then it must be all in your head.  The specialist who diagnosed me told me that I was ahead of the technology curve and just had to wait for technology to catch up.

Slowly, it has.  Brain scans have found lesions in CFS patients' brains.  Functional MRIs have found that fibromyalgia patients' brains light up differently.  None of those technologies existed when this started.  Some of us were tested for every virus for which there was a blood test, but as time goes on, there are tests for viruses that didn't have tests back then.

Eventually, the technology will catch up, a real diagnosis and treatment will come about ... but not fast enough for many of our patients, who will die or commit suicide while waiting to be taken seriously.

As Dr. Nick Mann said, "There used to be a culture of getting to the bottom of the problem. There isn't that now. I find that really sad."  Part of the problem is that doctors have become too dependent on tests in diagnosing; they don't really listen to the patient, sort through, find a diagnosis that fits, but instead take the mindless route of "if it doesn't show up on a blood test, it doesn't exist."  And, as one of our own experts noted, CDC isn't looking because "they don't WANT to find anything."

1 comment:

Kathryn Treat said...

It is so easy to pass unexplained or hard to diagnose illnesses as being all in one's head.

A lot easier than trying to figure it out.