“The most difficult thing was not knowing what it was that I had. Which in turn gave me no real answers on how to fight it to get better. Even when the doctors gave me a pretty concerning diagnosis–the time I spent not knowing what was wrong with me was more difficult than learning my diagnosis.”
That comment came from “John,” a patient whom I recently advocated for; he had spent the better part of the last year trying to figure out what was going on with his health.
John kept returning to the emergency room with fevers, pain in the right upper side of his abdomen, and had on one occasion grown bacteria out of his blood. But he had no idea what was causing the recurrent fevers. After reviewing his chart, it was evident that some of the doctors knew what his initial diagnosis was, but for some reason either hadn’t shared it with the patient or when they did, it was not sufficiently understood; and those responsible for writing John’s discharge summary did not record a diagnosis, which led the patient and family to be confused.
I connected John with a new gastroenterologist, who finally gave him a definitive diagnosis: secondary sclerosing cholangitis. It turned out the patient’s bile duct had been injured during a routine gall bladder surgery (cholecystectomy), but no one had read the doctor’s note, or connected the problem then to the symptoms John was having now. I also found an infectious diseases doctor to follow him in case the serious infection recurred.
John shared with me that he was still worried sometimes; what if this was just another wrong diagnosis? “From past experiences with doctors calling my symptoms “muscle pain” or “Crohn’s” or “autoimmune hepatitis” or “bad gallbladder” or ischemic colitis” or “just old age” — it makes me skeptical now,” he said.
John finished on a positive note: “The best part is hopefully having the correct diagnosis with a plan going forward. I am looking forward to the next 6-12 months with proper scripts, diet and exercise and to see myself improving hopefully with no major setbacks. That is my goal.”
What factors are important to ensuring a successful diagnosis? I would point to these key components:
- Don’t go it alone. Take a friend or family member with you to your doctor’s appointments. That friend can be a second set of ears and may even help lower your stress level.
- A Master Diagnostician? Great if you can find one, but really you just need a doctor or health care provider who will listen to your concerns and will work with you to find answers.
- Keep asking questions. And never assume anything. Including that a fancy diploma on the wall equals clinical judgement. They often go together–but it is not a given.
- Ask your doctor for a “differential diagnosis”–that means–to please tell you all of the things that your constellation of symptoms could represent. Physicians in the “cognitive” specialties, such as infectious diseases or rheumatology tend to be especially gifted at this; and if they don’t know the diagnosis, may be better positioned to recommend a physician to see for a second opinion.
- What medications are you taking? Check out their side effects from a reputable website such as Mayo Clinic or Medscape . Do the side effects explain any of your symptoms? Are you on the right dose? Are you taking several medications, and might they be having negative interactions?
- Finally, gather all of your records so that your doctor can knowledgeably review them. And always ask for your own copy…and read the notes in the electronic record if they are available to you. If you don’t understand them–ask questions!
As a young medical student, I worked in a clinic with an elderly neurologist. He was still seeing patients even though he had difficulty navigating the hallway–he’d had polio as a young boy, and his legs were of different lengths. His patients revered him. One young man, “Jim,” came in and thanked him for giving him a diagnosis. “It was like I could live again. I literally felt that I could walk again,” Jim told him. The neurologist turned to me afterwards and said solemnly: “It is terribly difficult not to have a diagnosis.”
Still, it was remarkable to me that for John, it was harder not to know what he was suffering from than to be given a challenging diagnosis. Yet that is what he said.
What made the difference for John in his quest to find a diagnosis? He had a really powerful advocate–his wife. She never gave up.
**Disclaimer: All patient names and identifying details have been changed to protect client confidentiality. The suggestions given here are not intended as a substitute for the medical advice of your physician.
