Need advice/help on whether to keep pushing for definitive diagnosis

1.  https://www.studyfinds.org/second-opinion-doctor-diagnosis-study/

“SECOND OPINION FROM DOCTOR NETS DIFFERENT DIAGNOSIS 88% OF TIME, Study Finds

8Apr - by Daniel Steingold -  232 - In Health Studies

ROCHESTER, Minn. — When it comes to treating a serious illness, two brains are better than one. A new study finds that nearly 9 in 10 people who go for a second opinion after seeing a doctor are likely to leave with a refined or new diagnosis from what they were first told. 

Researchers at the Mayo Clinic examined 286 patient records of individuals who had decided to consult a second opinion, hoping to determine whether being referred to a second specialist impacted one’s likelihood of receiving an accurate diagnosis.

The study, conducted using records of patients referred to the Mayo Clinic’s General Internal Medicine Division over a two-year period, ultimately found that when consulting a second opinion, the physician only confirmed the original diagnosis 12 percent of the time.

A new study finds that 88% of people who go for a second opinion after seeing a doctor wind up receiving a refined or new diagnosis.

Among those with updated diagnoses, 66% received a refined or redefined diagnosis, while 21% were diagnosed with something completely different than what their first physician concluded.

“Effective and efficient treatment depends on the right diagnosis,” says lead researcher Dr. James Naessens in a Mayo news release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we a_s_s_ume are not being referred at all…”

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2. https://qz.com/949860/get-a-second-opinion-doctors-usually-arent-right-the-first-time/

“…Misdiagnosing a patient can sometimes be fatal, but how often is unclear. Last year, a controversial study from Johns Hopkins University said that medical error—which includes mistakes in diagnosis—are the third-leading cause of death in hospitals behind cancer and cardiovascular diseases in the US. As ProPublica notes, doctors don’t list medical errors on death certificates, so counting the actual number of deaths presents its own set of challenges. That said, the National Academies of Medicine estimates (pdf) that diagnostic errors lead to up to 10% of all patient deaths, and up to 17% of all hospital complications…”

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3.  http://www.webmd.com/cancer/carcinoembryonic-antigen-cea#1

“Carcinoembryonic Antigen (CEA)… The carcinoembryonic antigen (CEA) test measures the amount of this protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). It may also be present in people with cancer of the pancreas, breast, ovary, or lung.

CEA is normally produced during the development of a fetus. The production of CEA stops before birth, and it usually is not present in the blood of healthy adults…

The carcinoembryonic antigen (CEA) test measures the amount of this protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). It may also be present in people with cancer of the pancreas, breast, ovary, or lung…

What Affects the Test

Heavy smoking affects the test results.

What To Think About

• The CEA blood test is not reliable for diagnosing cancer or as a screening test for early detection of cancer.
• CEA testing is a reliable test for recurrent colon cancer if the original cancer produced this protein before treatment.
• Most types of cancer do not produce a high CEA. Having a normal CEA level does not mean that you do not have cancer.

• CEA levels usually return to near-normal levels within 6 weeks of starting treatment if cancer treatment is successful.
• Measuring the amount of CEA in other body fluids, such as abdominal fluid (peritoneal fluid) or the fluid around the brain and spinal cord(cerebrospinal fluid, or CSF), can determine whether cancer has spread to that part of the body.
• Other diseases, such as COPD, cirrhosis, and Crohn's disease, may also raise CEA blood levels.

Carrie,

You sure have a lot going on.  I can't tell you a lot.  I do know that I was having weird vision issues, when I was diagnosed, and my eye doctor told me that women with ovarian cancer produce an antibody that can affect vision.  If I was in your shoes, I would find a functional medicine doctor or naturopath.  They work to find out the origin of symptoms and address them holistically.  Your hormone issues are something they can definitely look at and work on.  I hope your condition is something minor, but these types of specialists can help you identify the cause and support your body so that things can be resolved.

Good luck.

Wow, Carrie, what a mess.  I hope you get some answers soon.  I think you definitely need to keep testing.  But I have found, that when doctors just can't come up with a diagnosis, other options can help.  Maybe some acupuncture or a visit with a functional medicine doctor or naturopath.  I have had some weird things crop up over the years, which were easy fixes in the holistic community, but led to more and more invasive tests in the conventional medical community before I turned to other options.  Last year, for example. I thought I was having gall bladder issues.  I had an ultrasound, which was negative.  The pain was not intense, but was chroic and lasted for months.  It really dragged me down.  I went to my primary care doctor and he recommended an endoscopy.  I had that and it was also negative.  My doctor was going to recommend some other test to measure the fucntion of my gall bladder.  In the meantime, I went to a chiropractor and it turned out I had a rib out of place.  Wish I had gone to see her a lot earlier.  Good luck .