I Don't Know What is Wrong with You.....

As people who know me can tell you, I am typically not keen on driving - especially in cities.  We live close to NYC and Philadelphia, and I have never driven in NYC.   Only since my wife got sick have I driven to Philadelphia, where her specialist is located.  I am not going to claim I suddenly enjoy driving in that environment, but now that I have done it twice without wrapping my car around a telephone pole (which I would have considered a success compared to some of the other outcomes I was fearing), I can safely say that I don't really have a problem with it anymore.

But you aren't here to read about my driving.  You are here about Gastroparesis.

Picture, for a moment, being so sick that need you go see a specialist for help.   You set the appointment (which typically takes months) and wait anxiously.   As the appointment gets closer, the specialist calls you and asks you to come in earlier in the day to get a specialized test to rule something in or out.

You get to the appointment and take the 3-hour test while anxiously awaiting your appointment later in the day.    Finally, you get in to see the specialist, and after a half an hour or so he comes out with a response such as "I don't know what is wrong with you...oh, and that test came back negative".

If you haven't been in that situation before, I bet your imagination is running wild now:  How come they consider you a specialist?  Why are you ignoring my obvious symptoms?   I drove all this way just to hear you tell me that you don't know?  Because this blog is family friendly, I will leave out some of the more brutal responses you may have.

But here's the thing:  That attitude is not the right attitude to have at all.  

If a specialist says "I don't know", it could be more of a blessing that a curse, even if it doesn't seem that way at first.    Why?  Because a good specialist is not going to throw you out the door at that point - they are going to attempt to solve the puzzle for you and run as many tests as possible to see what is going on.  

This is what happened to Colleen today.   Her symptoms do not really add up 100% to what you read about Gastroparesis online - but because everyone who has the disease has different symptoms and causes, it is easy to just write off your off-the-beaten-trail symptom as just another annoyance with Gastroparesis that hasn't been added to the list yet.

Colleen is going to get a boatload of tests done over the next several weeks.   In a future blog post, I will discuss those tests and what they are designed to do.   We need to get to the bottom of this whole thing, and these tests should give us a bigger picture of what is going on.

Yesterday, I mentioned that she was going to be tested for SIBO today. The test happened, and it came back negative.  

In the end, I appreciate any professional (especially doctors) who are willing to check their egos at the door and accept the fact that they simply do not always know.  In the case of Colleen's doctor, I think he doesn't know because he simply doesn't have enough information to draw a conclusion.  I am hoping that within a few months, we will have more answers than questions.