A Diagnosis Is Always Important: May 2009

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

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

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

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