When we first started looking for answers to Meghan's symptoms, doctors began running lots of blood tests. She gave so many tubes of blood - which often made her feel worse since her blood volume was already low. I had all of her results stapled together by doctor or facility and would often highlight or compare results trying to find something that someone had missed or something that was near the upper end of a range. It was frustrating because the results always came back fine - for everything they tested. No gluten sensitivity, no rheumatoid arthritis, no sjogrens, no lupus, no sensitivity to dairy or meat or anything else they would test - the list goes on and on. Most of her lab work was pages long. I always requested copies of all the tests to be mailed to me if they didn't already give to us to keep. I would google the things I highlighted to try to learn more.
One thing that stood out to me was a test that some doctors would run that was a line item on her results that simply said ANA and then whether it was positive or negative - not all included this because we were told it was a general test and often had false positives. Very early on, one of the neurologists we saw said her ANA was positive but none of the coordinating tests had high levels so it had to be a false positive. I hightlighted it and it stayed in the back of my mind. (Some examples of coordinating tests would be a test for a specific autoimmune illnesses already identified by a specific antibody like rheumatoid arthritis or sjogrens or lupus.)
ANA stands for antinuclear antibodies. When you become sick, your body creates antibodies that target the foreign organisms or germs and finds other cells or antibodies to help fight off the infection. As your body is attacking and fighting, the result is inflammation. But sometimes your body's antibodies get it wrong and start attacking healthy cells. These are called autoantibodies - and those that attack the nucleus of healthy cells are called antinuclear antibodies. Everyone naturally has some autoantibodies but usually in very small amounts and why there can be false positives. The ANA test is simply looking for the presence of autoantibodies.
We continued seeing different doctors and Meghan had the general ANA test three more times. Each time with the same result - positive. I argued that it had to mean something. But each time it was dismissed. One nurse told me it was perfectly normal - even with all of her unexplained symptoms. I now think the reason her ANA test continued to be positive was because of the presence of an autoantibody that had not yet been identified to a specific illness. Such as POTS. Dysautonomia International funded a very small study that shows a possible link between positive ANA results and POTS. Read the article here...
Researchers who think they have identified antibodies specific to POTS are working to create a blood test that could show these newly discovered antibodies. This could one day be added to the list of tests that coordinate with the positive ANA result. The possible link between auto-immune illnesses and POTS would lead one to believe that. I am not a doctor or a researcher - but this is a definite possibility. See our blog post on Is POTS syndrome Really Auto-Immune?
Other research projects that are funded by Dysautonomia International can be found here...
Note: Of course there are people who do have false positives. But I think it's something worth noting. Something to be aware of...especially if you have similar symptoms and have done lots of searching for answers without finding any.