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.

Wednesday, January 28, 2009

APS Antibody Test

One of the most important lessons I’ve learned through my medical journey is which lab conducts your test is important. If lab tests return normal but symptoms suggest otherwise, it may be worthwhile for you and your doctor to find a lab that conducts research on the test you have in question because there may be perfectly logical reasons why the tests don’t agree with the symptoms. I had so many physical symptoms of the Antiphospholipid Syndrome (APS) it wasn’t funny, but all the doctors abandoned the diagnosis because my blood tests returned normal. Through my internet reading I ran across the following article that shed some light as to why my tests might be normal. There are other APS antibodies that only a few research labs are capable of testing and some people may only be positive for the obscure antibodies.

APS Article

Lab requisitions form for your doctor to send your blood to be tested.

APS Lab in Indiana

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?

Friday, January 9, 2009

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

Saturday, January 3, 2009

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