Everything Looks Fine To Me: When Test Results Bring Frustration
I know it might sound contradictory to most, but one of the worst things someone in chronic pain can hear from a doctor is, “Everything looks fine to me!”
I don’t know if they expect us to jump for joy, but take it from someone who has been told “I'm fine” several times, I am not jumping nor do I feel joy.
Something is wrong
Chances are unless you really love going to the doctor, you are in an office because you feel that something is wrong. You are in pain, a part of you feels numb, your urine is purple, or any other symptom you can imagine. When you go to a doctor, what you want to find out is: “Why?”
"Why is something abnormal," at least. "Why do you feel at death's door," at the worst.
A doctor will do some kind of test to figure this out and the only thing you want is a “positive” result.
The test must be wrong!
Whether you found it on WebMD or your doctor suggests it, when you hear a diagnosis that totally fits all your symptoms, you want that diagnosis. And when the results come back, everything is fine...You go back to square one.
What is wrong with me?! Or, what is wrong with this test?
(For the record, I've been tested twice for mast cell activation syndrome and both times it came back negative. However, the symptoms are all me and I refuse to accept it. I'm pretty sure he tested the wrong sample.)
But, no matter how you choose to feel about a negative test result, it is very frustrating! You are looking for answers, and you get more questions.
If you choose the path of still trying to figure out what is wrong, and not breaking into the lab to do the test yourself, you have a few options.
This option has gotten itself a bad name and the image of hypochondriacs searching for and inventing symptoms so they can go to the doctor and tell them that they contracted “Black Death.”
However, I ask you to get past this idea and realize that Google kinda rocks when it comes to disease research. You can search for symptoms and/or specific diseases and find out everything about it. It might not be your actual diagnosis, but it could also help you get there.
What I love about medical searches on Google is getting more info on test results. “Why is my ABC high? What is XYZ?” Along with an explanation of what that specific test means, it also gives you a list of reasons in nice little boxes about why you might have this result. I had an odd result not long ago, and from Google I learned a certain supplement I was taking was probably causing it. My doctor agreed.
Take it to the masses
What I love about being not only a support group leader, but also a member of several other groups, is the access I have to tens of thousands of people living life just like me.
While giving medical advice is not permitted in most support groups, and I don’t encourage people to share their X-rays and test results, there is still a wealth of information to be gleaned from experience.
If you develop a rash after an injection, or a headache after a new treatment, chances are, someone else has as well. It is not always the same case for everyone, but there is comfort to be found when you are not the only person experiencing something.
Before I try a new treatment, I take it to my groups. I know I will not react the same as everyone, but I like to know what I might expect. As we all know, just because a drug’s pamphlet lists a side effect, it does not mean anyone will actually experience it. They just need to list it just in case.
Personal stories are a great resource to getting a clue of what might be going on.
Seriously talk to your doctor
Doctors work for you, not the other way around. Use them.
If a test result turns up nothing, don’t wait for your 4-month follow-up to ask questions. If they don’t call you a day or two after you get a result back, be proactive, and get them on the phone. Tell them “I was feeling good about this possible diagnosis, the test came back negative, I still feel something is wrong, what is our next step?”
If insurance will cover the test, get it. Nobody should be left with “Everything looks fine to me.”
Other than back pain and fatigue, what is the most common symptom that AS patients experience?