Diagnosis: a look back

The Lonely Patient [2]

Diagnosis: A Look Back

Everyone always asks, “when/how did you get sick?” That’s a difficult question to answer.
The doctors say that my ‘type’ of liver disease is so rare that they have no idea how it is contracted, other than that it is neither hereditary nor contagious. Like that helps. I’ve had my daughter tested for some of the markers anyway. If the doctors don’t know ‘how,’ how am I to believe they’re right when they say something ‘can’t’ happen?
The first accurate, empirical diagnosis was in 1997, and confirmed by Dr. Marshall Kaplan at Tufts [Boston] in 2000. That’s part of why Tufts is my first choice for a transplant.
Prior to that date I had bouts of joint pain, stomach problems, and ‘mono’ which was never confirmed by tests. I was treated for ‘mono,’ Crohn’s Disease, rheumatoid arthritis, among others by a variety doctors. I was tested and medicated under a whole number of medical premises by a lot of doctors. All were wrong.
After graduate school and working for the first time as a professional, my ex-wife insisted I see her doctor. He started with the usual: mononucleosis. Tests came back negative. He expanded his search for a cause. Blood work came back irregular. He consulted colleagues and came back with a diagnosis of: hepatitis, non-A, non-B. No one knew much about it; it couldn’t be cured, just rest and hope it went away. [This was in the early 1980’s.]
My first reaction was ‘I never liked Dr X anyway….granola-cruncher who didn’t believe in drugs……humph! What a lousy doctor.’...And after a couple months it all went away
Then it was ‘out of sight, out of mind’ for the next couple years as it didn’t come back. The next time I had symptoms that seemed completely different from the first, so I sought out entirely new doctors who seemed to treat those problems.
My friends suggested herbal /holistic medicines, chiropractic treatment, acupuncture, and just about everything else. I tried them all, and each seemed ineffective after about the third treatment.
I went through the conventional medicine routine, too…
After a lot of doctors, tests and treatments, I was back at the beginning: why am I sick, when did it start and how is it contracted and treated?
And so began my long, confusing trip through the health care system…