Posts like this are disheartening. How many times have people (mainly pre-health) from other areas of medicine posted negatively about podiatry with little to no actual knowledge about what they're talking about? Posts like that are the same thing in reverse.
People choose different career paths for a variety of reasons. I see no reason why there is a need to insult someone's choice simply because you feel as if you are higher up in some sort of self concocted success/knowledge ranking system. Everyone has different views of what success is. In the end if you're happy and live a fulfilled life what does it matter anyways?
Here's an article from our local newspaper about a woman who saw a half dozen MD's, including FP, Nephrology, Neurology, and Endocrinology. None of the MD's were able to make a diagnosis. Who was? That's right, a PA!
Once again it reinforces the idea that it's not the initials behind the name but the person in front of the initials that makes the most difference. From my contact with local PA's, they're a pretty sharp group of people.
http://www.bendbulletin.com/apps/pbcs.dll/article?AID=/20090924/NEWS0107/909240313
Diagnosis Odyssey
Finding out what's wrong can be a battle in itself
By Betsy Q. Cliff / The Bulletin
Published: September 24. 2009 4:00AM PST
It took more than a year and nearly half a dozen doctors to figure out why Ann Havelock's hands hurt.
Her pain began in fall 2007, when the then 67-year-old was helping her husband put a storm door on their Crooked River Ranch home. It wasn't cold out, she said, but her hands felt frigid. She brushed off the episode.
Soon, however, her hands started to ache so badly she couldn't ignore the pain. As a hair stylist in Bend, she worked all day, then came home and wrapped her hands in a hot pad. They hurt constantly.
It got to the point where I hated to go anywhere, except go to work, Havelock said. I didn't want to go to church. It was just miserable driving, doing anything other than just crawling into myself and trying to retreat into sleep to get rid of the pain.
Havelock first went to see her primary care doctor. When he couldn't figure out what was wrong, he referred her to another doctor, then another and another and another and another. Each time, leaving without answers, Havelock became more frustrated. The typically upbeat woman fell into depression. She cried, she said, nearly every morning.
Though her disease is uncommon, her ordeal is not. The diagnosis of disease is not an exact science and, especially when the disease is rare, it often takes several physicians to figure out what's wrong. People will live with pain or other symptoms for years, sometimes a decade or more, before they know what's wrong.
Even the best doctors can find diagnoses difficult. Symptoms of many diseases are vague or common to many illnesses. Many disorders do not have a test that can give sure answers. And, a patient may have something so rare that a doctor has not seen it since medical school, if at all.
There are no estimates of how often a patient leaves a doctor's office without a diagnosis, but both physicians and other experts say it happens often.
Frequently, it's not like there's this clear entity that can be easily diagnosed, said Dr. Michael Feldman, a nephrologist at Bend Memorial Clinic who saw Havelock. It's very typical that you have this multi-system complaint and there have been a lot of negative tests and a lot of frustration along the way.
The problem is particularly acute with rare disorders because, by definition, most doctors have less experience with them. In addition, physicians' training often teaches them to look for the likeliest explanation, said Stefanie Putkowski, a registered nurse at the National Organization for Rare Disorders.
Medical students are taught when they hear hoofbeats, think horses, not zebras. And, from our perspective, sometimes they need to think zebras.
Doctor to doctor
Havelock first saw her primary care physician, Dr. Alan Hilles, for her hand pain in March 2008.
Havelock's medical records from that visit suggest Hilles thought she had fractured or sprained her wrist; he ordered an X-ray of her wrist and over-the-counter pain medications.
Hilles could not be reached for comment.
The medications didn't help, Havelock said. She was back less than a month later and again a few weeks after that without a firm diagnosis. Hilles referred her to Feldman, according to medical records, for the pain in her hands and, because she had previously been a kidney donor, for possible complications of having just one kidney.
Feldman suspected complex regional pain syndrome, a chronic pain condition with an unknown cause. She had this funny pain syndrome in her hands, he said. It fit nicely with the pain syndrome diagnosis.
He put her on an antidepressant that is also prescribed for pain.
Havelock said that did not work. After two months, I was so depressed and I was swollen so bad, she said. I weaned myself off the antidepressant, and I didn't go back to him.
Someone suggested to her she try a neurologist. She did.
Medical records indicate Havelock first saw Dr. Craigan Griffin at NorthStar Neurology Clinic in Bend in July 2008. Her patient history notes a series of seemingly unrelated symptoms: burning sensation in her hands, a wrist injury with no evidence of fracture, possible complications of living with one kidney and perhaps even an allergy to ibuprofen. Her medical records suggest nothing stood out besides the pain.
That, doctors said, can make a diagnosis difficult.
Medicine is pattern recognition, said Feldman. Doctors look for groups of symptoms that suggest a disorder, then test to confirm or exclude specific diagnoses. Where there's no pattern, the diagnosis comes slower.
For the patient, that can be agonizing. It's very, very stressful, said Putkowski. People in that time period (before a diagnosis) often can't work because they are so ill. It impacts people in every way possible.
Griffin ran a series of tests, took a complete history and did a physical examination. He came up with possibilities but no diagnosis.
Havelock was growing frustrated. By that time, I feel like I'm getting the runaround because here's three doctors so far and I'm not getting anywhere.
Griffin concentrated on figuring out whether she had neuropathy, a nervous system disorder, but noted in his records another possibility: a skin disease called scleroderma. I was just struck by the tightening of the skin in the hands and fingers.
Medical records indicate that he suggested she see a rheumatologist, who would be able make a firm diagnosis of scleroderma.
A diagnosis
Havelock took a break from the physician merry-go-round that fall, and her medical records indicate she didn't see Hilles again until December. A few weeks later, at a follow-up visit, Hilles noted that she was distraught over not getting a diagnosis. He referred her to another doctor, an endocrinologist.
That visit did not result in a diagnosis or meaningful new findings.
Every blood test came back normal, Havelock said. But at the same time, I knew it wasn't all in my head. ~ I may have had one symptom of this disease, two or three symptoms of that disease, but not enough symptoms of any one disease to fit.
In March, she made another trip to another physician's office. This time she saw Tianna Welch, a physician assistant who specializes in rheumatology.
As soon as Welch saw her, she said, she knew what was wrong. People with scleroderma just kind of have a certain appearance, she said. I suspected it pretty much right off the bat.
On March 30 of this year, more than a year and a half after the beginning of her symptoms, Havelock finally had her diagnosis. She had scleroderma, a disease characterized by a hardening and tightening of the skin.
That tightening of the skin, which had grown worse and more visible since she first started seeking a diagnosis, was key to the diagnosis, said Welch. You kind of lose the elasticity. It becomes harder, she said. When you pinch (normal) skin it molds and it moves around. This one, it doesn't want to do that as much. It's tight.
Scleroderma is a rare disease in which the body produces too much collagen, the protein that gives skin structure and strength. As it did with Havelock, it often causes pain, swelling, tightening and even an exaggerated response to cold temperatures - known as Raynaud's phenomenon - that Havelock first experienced when installing the storm door.
There are two primary types of scleroderma: localized scleroderma, which just affects the skin, and systemic scleroderma, which can involve blood vessels and internal organs, including the lungs or kidneys. Havelock has the second type, often considered more serious, though individual cases vary widely.
There are about 300,000 people in the United States with scleroderma; about one-third of them have systemic scleroderma.
Havelock did not feel relief at having been given her diagnosis. It hit me because the pain that I was going through and the swelling that I was going through for almost two years now, and I finally get an answer and it's not a good one. It's a bad one.
She misread an information sheet she was given, thinking it indicated there was a good chance she would die soon. She crumpled, she said. I just lost it.
Living with scleroderma
Scleroderma can be particularly difficult to diagnose, said Dr. Greg Borstad, a rheumatologist at BMC who recently began seeing Havelock. The disease is rare, he said, and many of the symptoms are similar to other, more common disorders. A year or two to diagnosis is almost average, unfortunately.
There is no treatment for scleroderma. The only thing that can be done is alleviating symptoms. You're sort of left treating whatever the complication is, said Borstad.
For Havelock, that means several medications to control pain, swelling and blood pressure.
Havelock is stable now. But just after being diagnosed, she had an episode with her kidney, a complication of scleroderma, that put her in the hospital for several nights. She was heading toward kidney failure, said Feldman, who treated her during that episode, but she pulled out of it.
These days, she tries to look at the bright side. The tightening of her skin has taken away the fat on the underside of her arms. I can wear a tank top without my upper arms waving, she said, smiling.
Havelock also started a support group, which meets once a month at BMC, for patients with scleroderma. I will do everything I can to bring awareness to the center for this disease, she said.
At the group's first meeting in August, a half a dozen people, mostly scleroderma patients, showed up. I felt alone, Havelock said about when she was first diagnosed. I wanted to share stories.
At her direction, the women - the disease strikes women more often, and this group was all women - began talking about their experiences with the disease. The first, a La Pine woman, began with the frustration of going from doctor to doctor.
The most frustrating part, she said, was really just getting the diagnosis.
Betsy Q. Cliff can be reached at 541-383-0375 or
[email protected].
. Oh ya, you tried the family business thing!
