dahlia in my garden: Rio Fuego in Coleus leaves

Saturday, January 7, 2012

Quest for Diagnosis: 7 Tips to Navigate the Maze

Fighting a daily battle with pain and chronic illness symptoms takes a lot of energy and fortitude - but how do you handle all the unknowns if you are undiagnosed or believe you are misdiagnosed?

When my illness first appeared and literally toppled me with pain and disability, I began a nearly year long odyssey for a diagnosis. My HMO had me bouncing from specialist to specialist like a ping pong ball in a haphazard search for answers. As I limped to each doctor with my newly acquired cane, struggling with unrelieved pain and overwhelmed with fear, I felt like I wasn’t being heard at all. 

The first rheumatologist said the pain I was reporting didn’t match with my unremarkable x-rays, therefore I must be exaggerating and just learn to live with it. An orthopedist said I could possibly have bone cancer. A second rheumatologist said it could be Lou Gehrig's disease (ALS) which  which my grandmother died from at age 45. An internist believed I had a psychological problem which was manifesting in hypochondria. And it went on and on and on.

From my garden : Dahlia "Citron de Cap" with
background of Dusty Miller and Hypoestes.

Even though I was in so much pain I spent most days curled in the fetal position in my recliner... even though I was feeling desperate and depressed... even though I was so stressed I stopped eating, became anorexic, and lost 50 pounds... even though I told every doctor each of those facts... none of them ever referred me for pain treatment, psych support, or eating disorder counseling. In many of these appointments they hardly made eye contact or even touched me, opting only to read my file and give their opinion without asking me any questions or ordering any tests. I was so lost and scared, I got to a point where I didn’t know where to turn or what to do.

Months later, my parents intervened after seeing how messed up I was. They paid out of pocket to personally take me to Stanford University Hospital. Two weeks later, I had a diagnosis. Looking back now I can see where I made key mistakes. I had no real plan when I went to doctor's appointments and I felt so down and hopeless that I expended no energy toward doing my own research or keeping track of my symptoms. Additionally, I was in a complete physical and emotional crisis; not taking care of myself on any level only made me more miserable and further distracted me from finding a diagnosis.

It's important to remain focused, to keep organized on tracking symptoms and history, and most of all to take care of yourself. For many of us, finding a diagnosis is a long and arduous process. Here are some helpful signs and tips to aid you:

Seven Signs to Look for if You Feel You’ve Been Misdiagnosed
[from Arthritis Today, read full text of the article HERE]

1) Your diagnosis is based exclusively on the results of a blood test.

2) Your doctor has prescribed a treatment, but it isn’t working.

3) You were diagnosed by a physician working outside his or her specialty.

4) A lab test is needed to make a definitive diagnosis, but your doctor never ordered it for you.

5) Your symptoms don’t match your diagnosis.

6) You didn’t get a physical exam.

7) Your doctor didn’t ask enough questions about you.


Seven Tips for Navigating the Maze When Seeking Diagnosis
[taken from an AARP article, read full text HERE

~Keep detailed records: 
Ask for copies of your test results as they come in, keep a patient journal and track your symptoms carefully, take notes at appointments or record them, ask around about your family history and find out if anyone has had similar issues. Be faithful with keeping details because you never know when a small detail could be the key leading to a diagnosis.

~Come prepared to ask the right questions:
Have a list of question ready so you can maximize your time. Some sample questions to jot down: Is there more than one disease that could be causing my symptoms, and how good are the tests for diagnosing this condition? It’s also smart to bring a second person with you, because they’ll hear things differently and may pick up on something you missed.

~Be assertive:
Don’t be afraid to ask for tests or treatment you think might help you, but understand that you may not be be able to get them or they may not be the right thing for you. Check out reputable health sites like the Mayo ClinicNational Institutes of Health (NIH), and HealthFinder.gov

~Be honest:
Share all important information with your doctor such as what supplements you take, if you take illicit drugs/drink alcohol, any alternative therapies you are trying and any other things like, as in my case, untreated anorexia.

~Explore new avenues:
Patient-advocacy organizations such as In Need of Diagnosis  - and others that represent the interests of patients suffering from a particular disease - often try to match patients with the right medical specialist.  

~Trust your gut:
If you don’t believe the diagnosis, get a second opinion or even a third. I *always* recommend seeking a second opinion even if you agree with the doctor, just to make sure you’ve consider all aspects of your symptoms and to get other ideas about treatment options.

~In the absence of a diagnosis, treat your symptoms:
Figure out how to manage your disease through lifestyle changes, medications, physical therapy, or however you can. It may take you a long time to find a diagnosis but life keeps on going forward and you don’t want to be left behind. 

Looking back now, I should have insisted on seeing a pain specialist or getting help for my anorexia instead of waiting for a diagnosis or for a doctor to intervene. I know if I had gotten treatment for those in the beginning, I never would have become so ill and depressed. It’s vitally...  
...important for you to take the best care of yourself you possibly can as you go through the worrying period of seeking a diagnosis. Consider getting a therapist to help you deal with the fear, anger and frustration.

I want to end with two paragraphs from a blog post I wrote last year about managing worry (you can read the whole post here: Taking a Swing at Life’s Unexpected Curveballs) which is advice I think really belongs here as well:

“The key is not to let worry overwhelm you, to find ways to relieve it that are distracting or positive, and just focus on your day-to-day living. Try to handle what comes up as sensibly as possible and if you feel you need more support, then do as I have and seek out a therapist or support group. I know I wouldn’t be where I am now if I hadn’t gotten the therapy when I needed it.

Don’t let yourself fall into unhealthy habits as a way to control fear or depression. Avoid smoking, drugs, drinking, risky behaviors, eating disorders (this was my bad coping mechanism and it took a lot of struggle to get my life back), etc. Those types of coping will exact a heavy price for the temporary relief you feel when you use them. In the end they can take more from you than your chronic pain or illness ever will.”

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