My positive CANCA test puzzled all the doctors so I started researching ANCA antibodies in light of my other symptoms and test results. I had just recently been diagnosed with Autoimmune Hepatitis (AIH) which is an autoimmune disease where the immune system attacks the liver. I found a couple articles written by German scientists who discovered that AIH patients can be positive for CANCA as well as PANCA. Even more interesting they discovered that the target antigen responsible for creating the CANCA test result was smooth muscle. Anti Smooth Muscle Antibody (ASMA) is the commonly known antibody associated with AIH. I also tested positive for ASMA so the positive CANCA could probably be explained by ASMA.
Actin is a target antigen of anti-neutrophil cytoplasmic antibodies (ANCA) in autoimmune hepatitis type-1.
Characterization of target antigens from anti-neutrophil cytoplasmic antibodies in autoimmune hepatitis type-I.
Anti-neutrophil cytoplasmic antibodies in type 1 and 2 autoimmune hepatitis.
High-titer antineutrophil cytoplasmic antibodies in type-1 autoimmune hepatitis.
Welcome
I have suffered from autoimmune disease since the age of 17 and I have several relatives who are also fighting autoimmune diseases. I have been diagnosed with Autoimmune Hepatitis (AIH), Lupus, and the Antiphospholipid Syndrome (APS). Family members have been diagnosed with Rheumatoid Arthritis, Dermatomyositis, Grave’s, Hashimoto’s, Vitiligo, and Type I Diabetes.
In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.
As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.
Email: autoimmunediagnosis@gmail.com
In the search for my diagnosis, I have seen doctors in six states, from every medical specialty, seven of whom were Rheumatologists. I had an extremely difficult time finding a doctor to take my symptoms seriously because most of my blood work was normal and I did not look sick. I have a Master’s degree in Aerospace engineering and solve puzzles for a living as a systems analyst. I resorted to reading medical journal articles to try to put my own pieces together when the doctors were finished looking. I ended up being a very complicated case and had the unfortunate luck to end up with the rarest and oddest of symptoms, as if all autoimmune symptoms aren’t bizarre enough! It took me 13 years to finally find a doctor who understood my body.
As a result of my search for a diagnosis, I’ve learned a lot about the immune system, doctors, and the medical system. I’ve been asked by numerous people who have heard my story how did I find out certain facts, or how did I find a certain doctor because they also have a friend who the doctors don’t seem to be able to help? Over time, I’ll post all the knowledge I’ve gained over the years, to give someone else having troubles obtaining that elusive diagnosis some other options to consider when you hit a brick wall.
Email: autoimmunediagnosis@gmail.com
Medical Disclaimer
This website is for informational purposes only. Readers are encouraged to confirm the information contained herein with other sources. Patients should review the information with their professional health care provider. The information is not intended to replace medical advice offered by physicians. Remember I’m a rocket scientist not a doctor.
Monday, June 22, 2009
Tuesday, May 26, 2009
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
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
Tuesday, May 12, 2009
ANCA Antibody Specialty Lab - University of Iowa
Doctors tested my blood for ANCA antibodies (Anti-Neutrophil Cytoplasmic Antibodies) when I was showing symptoms of vasculitis (inflammation of the blood vessels). ANCA antibodies are usually positive in vasculitis and make 2 patterns if positive, C-ANCA or P-ANCA. P-ANCA antibodies have been found in other rheumatic diseases such as Lupus, but C-ANCA is highly specific for Wegener’s, a rare form of vasculitis. When my blood came back positive for C-ANCA and it was clear I did not have Wegener’s, doctors didn’t know what to make of this. The University of Iowa has researchers who specialize in the ANCA antibodies and is where unusual ANCA results are retested.
Dr. Targoff
University of Iowa Lab Description
University of Iowa Lab Requisition Form
Dr. Targoff
University of Iowa Lab Description
University of Iowa Lab Requisition Form
Monday, May 4, 2009
Why Your Doctor Behaves The Way He Does When He Doesn’t Know What Is Wrong
Doctors and patients often don’t understand one another especially when a definite diagnosis seems impossible. Doctors and patients are frustrated by the same problem and end up at odds with one another instead of partners searching for the same solution. This is a very insightful website from a doctor about how doctors think and how you can influence your doctor to best help you. I wish I had read this article years earlier.
When Doctors Don't Know What's Wrong
When Doctors Don't Know What's Wrong
Sunday, April 26, 2009
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
“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
Sunday, April 12, 2009
Professional Napper
Tuesday, March 3, 2009
A Patient’s Description of a Good Doctor
Due to recent negative publicity about healthcare and doctors in general, BMJ asked and interesting question on their website. The theme issue was: What is a good doctor and how can we make one?
There were lots of insightful responses from doctors and patients. As a patient who has struggled to find a doctor to give meaningful and compassionate care, I too was curious as to what makes a good doctor. The best response came from a patient, Louise Ward. Below is her description of a good doctor.
“For several years I was registered with a wonderful GP in my home town. I never appreciated him until I moved away to study at the University. I went from being an empowered individual to a patient number. There was no recognition that I had existed before I joined my new practice - they never referred to any of my previous doctor's notes. It was upsetting to sit across the desk from the GP, give an account of what had happened, and then find out that the salient points had not been recorded in my notes. My suggestions for what might be happening were treated with, I felt, derision. After all, what would I know - I'm a mere patient!
It got to the point where I would only see my GP if I had a fair idea of what was going on. If I was concerned or worried I'd return home and see my "real" GP as a temporary resident.
So why was one GP wonderful and the other not? My "real" GP became my expert best friend. He took an interest in me as a person and not as a set of symptoms; he knew when to speak and, more importantly, when to shut up; my history was that MY history not his questions with his answers; I felt empowered and never felt bullied into taking a course of action that I didn't want to follow. At the end of the day he seemed to realize that I might be better placed to make suggestions as to what was going on.
My experiences lead me to make the following as a summary of a good consultation. The doctor asks questions; the patient gives answers; the doctor uses their knowledge and skills to help the patient make sense of their answers; the patient ultimately decides what they want to do with their doctor's support. My unhappiness arose when the doctor filled in her own answers.”
The bottom line is a good doctor is one who listens and respects the patient as a partner in healthcare.
There were lots of insightful responses from doctors and patients. As a patient who has struggled to find a doctor to give meaningful and compassionate care, I too was curious as to what makes a good doctor. The best response came from a patient, Louise Ward. Below is her description of a good doctor.
“For several years I was registered with a wonderful GP in my home town. I never appreciated him until I moved away to study at the University. I went from being an empowered individual to a patient number. There was no recognition that I had existed before I joined my new practice - they never referred to any of my previous doctor's notes. It was upsetting to sit across the desk from the GP, give an account of what had happened, and then find out that the salient points had not been recorded in my notes. My suggestions for what might be happening were treated with, I felt, derision. After all, what would I know - I'm a mere patient!
It got to the point where I would only see my GP if I had a fair idea of what was going on. If I was concerned or worried I'd return home and see my "real" GP as a temporary resident.
So why was one GP wonderful and the other not? My "real" GP became my expert best friend. He took an interest in me as a person and not as a set of symptoms; he knew when to speak and, more importantly, when to shut up; my history was that MY history not his questions with his answers; I felt empowered and never felt bullied into taking a course of action that I didn't want to follow. At the end of the day he seemed to realize that I might be better placed to make suggestions as to what was going on.
My experiences lead me to make the following as a summary of a good consultation. The doctor asks questions; the patient gives answers; the doctor uses their knowledge and skills to help the patient make sense of their answers; the patient ultimately decides what they want to do with their doctor's support. My unhappiness arose when the doctor filled in her own answers.”
The bottom line is a good doctor is one who listens and respects the patient as a partner in healthcare.
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