My Very Own Personal Apocalypse, Part 3

September 16, 2014

Dear friends, family and constant readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome and how it changed my life.  In Part 2, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In Part 3, I'll share with you how I was finally and properly diagnosed, and what it took to get it.

When last I left off, my friend and psychiatrist decided to refer me to a colleague who was both a practicing psychiatrist and a physician, believing that with expertize in both mental and physical illnesses he would be able to accurately diagnosis my malady.  This was in the winter of 2002.  I had been ill for approximately 5-6 months at this point.

An appointment with this new doctor was set.  Copies of all of my most recent medical records were sent to him so that he could review what had been done thus far.  His practice was affiliated with the Medical College of Virginia (MCV), which is associated with Virginia Commonwealth University in Richmond, Virginia, and considered one of the best hospitals in the Commonwealth.

I actually had previously met this new doctor.  He was a member of another congregation near my own, River Road United Methodist Church.  He had been a panelist on a congregation-wide discussion we had held on how to cope with the aftermath of the events of September 11th the previous fall.  He was affable and gregarious - very easy to like and trust.  In our first meeting, we reviewed my case together: the sudden onset, the continuing symptoms, medical tests performed to that point and the different diagnoses I had received.  He then suggested a new series of testing for both familiar and unfamiliar diseases.  This testing would occupy the rest of the spring and much of the summer.  

The pattern of this new testing was that I would go wherever he referred me and offer up some vital bodily fluid, permit myself to be poked or prodded or have some various organ or section of my body x-rayed or MIRed.  Then I would wait for the results of a given test.  In every single instance, the result that I would receive was "negative."  Test.  Wait for the result.  Negative.  Another test.  Another period of waiting.  Another negative result.  Etc., so forth and so on...

This left me with a sense of despondency that we would ever find out what was going on with my body.  I

clearly remember one day when I was being tested for multiple allergies at the Department of Rheumatology at MCV.  This doctor was an immunologist, who specialized in allergy-related diseases.  She tested me for various allergies by pricking my back with multiple needles (20 or more) - each a test for a different allergy.  After we waited the appropriate amount of time, she examined my back.  I could tell that something wasn't right by her expression - she had a wrinkled brow, for one thing.  When I asked her what she had found, she told me that the test must have been faulty in my instance because all the needle pricks were showing negative.  She then asked me if she could retest me.  That meant enduring another series of multiple needle pricks.  It wasn't without a degree of pain, but I reluctantly agreed.  She proceeded to test me one more time.  Once again, the results were completely negative.  I showed no indications of being allergic to any of the things for which they tested.  At this, my shoulders slumped and my voice cracked as I asked her, "Does this mean that I'm not really ill?"  She looked at me with a very serious expression and said, "Absolutely not!  It's clear to me that something is making you sick.  But it just may be that whatever that thing is, with our current level of medical technology, we may very well have no way of knowing what it is.  In another decade or so, we may look back at these very same results with new technology and see something obvious that we just can't detect today.  I'm so very sorry."

I returned to the doctor/psychiatrist who was directly my testing. He was completely non-plused. He had expected at least one positive result, but to have none was baffling to him - and to me. He had ruled out any psychiatric disorders as being the cause, so depression was taken off the table. And with all the medical testing, most other diseases had been excluded as well. He expressed a feeling that he had let me down. I assured him that no, he had not. He had done everything I could have asked. I felt that he had been extremely thorough. "So what now?" I asked. After thinking about it, he concluded that we wait for a few weeks or months to see how my illness progresses. If things were no better, he said that we would need to take our exploration to the next level. That would mean going to a research hospital, like Duke or Johns Hopkins. What I needed was a doctor and a medical community that routinely saw the non-routine. Maybe they could help.

So another season passed as I waited on my illness to make itself known. That November, near the first anniversary of becoming ill, my father died suddenly. I left for Kingsport, Tennessee, my hometown, to look after his affairs and see to his funeral. As it turned out, I was designated executor of his estate. That meant more trips to upper east Tennessee. I was overwhelmed - first by my grief of losing Dad, and then my the many responsibilities I had just been given, all the while my illness continued unabated. In fact, the stress I was under only served to exacerbate my symptoms. One night, I was sitting in my parents' kitchen, when I decided to call my wife, Lynn. That day had been particularly rough and I could hardly hold my head up. As I poured out my woes to her, I told her that I had come to a conclusion - it was time to go to a research hospital. I didn't care which one. But I desperately needed to see someone who could help me.

(Dear readers, I had hoped to finish this story in three posts. But as I write this, I realize that it will take one more installment to properly conclude my narrative. I don't like for my blog posts to be too long, so I feel as though I need to break this one up into two separate posts. Thanks for your understanding.)

Peace,

Stephen