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.

Sunday, January 18, 2009

Medical Insurance Woes

I recently had some specialized blood work performed that could only be sent to one lab. The blood was drawn by the local hospital, which my family doctor uses for a lab. This hospital has recently fallen on hard economic times as many hospitals have across America. The lab technician snapped at me because the specialty lab did not send the tube or prepaid box to send the blood. I told her the hospital was supposed to charge me for the blood draw and shipping. However, she proceeded to pick up the phone and started complaining to someone at the specialty lab. At one point in the conversation she yelled over the phone, “Your lab is getting to perform the test, all we are getting out of this is a blood draw!”

It is sad and frightening that medical insurance reimbursements have driving the medical community's focus away from patient care. As a patient, comments like this frighten me that the hospital is more concerned with its bottom line than my care. It sounds like they are not interested in taking care of all of my health needs, only the ones that make them money. How is that supposed to make me feel confident that these medical professionals will make the right decisions concerning my health when insurance companies have pressured them to the point that the bottom line is first priority? Who is a patient supposed to trust?

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