A Word About Medical Tests

Here's one of the big differences I see between healthy people and people who either have a chronic illness or are in the process of having a serious illness diagnosed:  when a healthy person goes in for a medical test, they worry that the results will be positive and they may have to face the possibility that they are sick.  When the test results come back "negative" ("normal"), the healthy person is happy and relieved.  He/she walks off into the sunset and goes on with his/her life.  When someone in the diagnosis process gets a "normal" or "negative" test result, they are sometimes disappointed.  In fact, they are sometimes devastated.  The reason for this is simple:  there is nothing worse than not knowing.  When I was diagnosed with Parkinson's, my first reaction was actually relief.  I was just glad to know what I was up against so that I could get on with it.

My friend Karen is in "Diagnosis Hell" right now.  They thought she had Parkinson's, but her symptoms were much more aggressive, and some didn't fit in with PD at all.  Then, she didn't react well to the PD medications, so they decided she must have a "Parkinson's Plus" disease.  Eventually, she was diagnosed with MSA (Multiple System Atrophy).  Now, MSA is a horrible, terrible disease with a life expectancy of 6 to 10 years from diagnosis.  Karen is only 50.  Naturally, she wants to make sure of the diagnosis.  We are all hoping that she has been misdiagnosed.  She had her hopes pinned on a series of tests which were finished up yesterday.  I called her last night to see how it went, and I knew right away that it was not good news.  Karen sighed and said in a small, tired voice "the tests all came back negative".  Well, we just cried on the phone together for a little bit, then we discussed her options.  She's not at the end of the rope yet; there are still tests which can be done.  Her only other option is to just give up, and that is NOT her style.

You see, this is why sometimes we aren't all that thrilled when we get a test result that says "normal".  It feels like you've asked the medical community "what the hell is wrong with me?" and there was a collective shrugging of shoulders.

So Karen, keep on trying, keep on plugging.  There is an answer out there, and even though we may not like it, it's way better than "uhhh.... I don't know".