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

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.

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.