Doctors Feel Threatened By Invisible Illnesses

While this article deals with Fibromyalgia, it will ring true with anyone who is suffering from an autoimmune disease. Almost everyone with an autoimmune disease has had at least one rude encounter with a doctor, friend, or loved one questioning their pain.

Some Doctors, Friends, Relatives Dismiss Sickness

"I know in my case I just had the idea if you got sick you went to a doctor and they treated you," Matallana said. "I never, ever imagined someone would question my pain and my inability to function. That was to me almost as bad as enduring the physical symptoms.”

“The transformation of dynamic people into suffering wrecks, without any apparent cause, prompts confusion and questioning. Fibromyalgia patients say even friends, relatives and spouses find it hard to accept the reality of what has been called an invisible illness.”

“Dr. Patrick Wood, an assistant professor of medicine at Louisiana State University, decided to specialize in fibromyalgia … I don't think it makes me popular with my colleagues, but we're trained to be little gods and anything that challenges our god-like capacity we dismiss," Wood said. "(A doctor) could say, 'There's nothing to objectively demonstrate you're really sick. How do I know you're sick?' You have to trust the patient's report, which we're often not willing to do when it comes to pain."

“Some doctors dismiss patients with vague complaints of pain as hypochondriacs or malingerers, lazy people looking for an excuse not to work. It doesn't help matters that he and other doctors regularly encounter true malingerers, about whom they must make judgments to determine government disability payments.”

"Every doctor is faced with being a useful idiot, being a tool for somebody who wants to get out of work," said Lubin, who trained at Yale and Harvard. "I'd rather you fooled me once and then I could say, 'Shame on you,' rather than try to prevent my ego from ever being bruised by assuming everyone whoever asked me for a pill for their pain is a drug-seeker. We can't lose our humanity just because we're afraid of being hoodwinked."

What Do ANCA Antibodies Look Like?

When I tested positive for C-ANCA more than once by different labs, I definitely wanted to know what they looked like.

University of Birmingham

Testing positive for CANCA still did not reveal a diagnosis. In my search to learn more about ANCA antibodies I ran across a very interesting article. The article gives images of ANCA antibodies, but the neat thing is it gives a description of all the antibodies the patient tested positive and negative for. The images do look different depending on the combination of positive antibodies.

A review of immunofluorescent patterns associated with antineutrophil cytoplasmic antibodies (ANCA) and their differentiation from other antibodies

Narrative Medicine

Too often women with autoimmune diseases end up being belittled by their physician or even blamed for making up their symptoms. A new field within medicine has emerged that will hopefully address the attitudes some doctors leave medical school with. As a female patient with autoimmune diseases that has been stereotyped more times than I would care to remember, this quote gave me hope that maybe someday doctors won’t resort to belittling their patients when they are actually frustrated with the patient's disease.

“Sick people need physicians who can understand their diseases, treat their medical problems, and accompany them through their illnesses. Despite medicine’s recent dazzling technological progress in diagnosing and treating illnesses, physicians sometimes lack the capacities to recognize the plights of their patients, to extend empathy toward those who suffer, and to join honestly and courageously with patients in their illnesses. A scientifically competent medicine alone cannot help a patient grapple with the loss of health or find meaning in suffering. Along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf. This is narrative competence, that is, the competence that human beings use to absorb, interpret, and respond to stories. … it enables the physician to practice medicine with empathy, reflection, professionalism, and trustworthiness.” - Rita Charon



Narrative Medicine: A Model for Empathy, Reflection,Profession, and Trust

Professional Napper

I just wanted to let everyone know that I’ve been fighting a flare recently and I promise to write another article within a couple weeks. Thought I would leave you with the “professional napper” comic strip.

APS Antibodies Found in Spinal Fluid

It is a relatively new concept to test patient’s spinal fluid for antibodies. I displayed multiple symptoms of APS, however I did not have a single positive blood test result. Because I had been having daily headaches for over six months and I was on immune suppressant drugs, the doctors decided to order a spinal tap to rule out an infection. Since spinal fluid would be available, they decided to send some of the spinal fluid off to the APS lab in Indiana as well as some of my blood. My spinal fluid ended up being positive for anti cardiolipin. However, my blood had been tested for that antibody for over 13 years by multiple labs and my blood was never positive. This was supportive proof for the theory that the blood brain barrier can make antibodies separate from the blood stream.

Research article from PubMed

So What Do Antibodies Look Like?

Why and how seems to pop out of engineers mouths before we even realize it. Naturally, I couldn’t help but wonder what antibodies look like under immunoflorescence. Below is a really neat web site that has actual pictures of most of the commonly tested antibodies.



University of Birmingham

Issues With New Automated ANA Test

I was monitored by a Rheumatologist for eight years when my disease was mild and only required treatment for Raynaud’s. During this time, the Rheumatologist ordered blood work once a year, which included an ANA test. The ANA test was positive every time.

Once my disease progressed to the point I had troubles walking, all of the sudden my ANA tests started to come back negative. I had some doctors question if my problems could be autoimmune related since my ANA was now negative. Fortunately, I had eight years of positive ANA tests to make them question the new results.

One of the Rheumatologist I saw had seen this happen to other patients. He told me that most labs had recently switched to a new automated method to test for ANA. To save money and hopefully standardize test results, labs switched to an automated method where a computer scans the blood instead of a specially trained lab technician. He had even seen a patient with raging Lupus all of a sudden have a negative ANA test. He sent my blood to a lab that still used lab technicians trained to titer the blood and look at the immunoflorescent patters and sure enough I was still ANA positive.

Most doctors, especially doctors who are not Rheumatologist, do not know that the ANA test they order has changed and that they may need to order the older more expensive method to confirm the results in a patient highly suspicious for autoimmune disease.

Doctor Comment on New ANA Test

(You may have to create an account at medscape to read the article. It is free and worth it.)

Journal Article on Automated Methods

In the sixth paragraph under the discussion section, the article states that the automated test detected less true positive results in patients with autoimmune diseases other than Lupus such as Rheumatoid Arthritis and Polymyositis/Dermatomyositis.

Information about other antibody testing methods:

Enzyme-Linked Immunosorbent Assay (ELISA)
Immunoassay
Western blot