Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, December 18, 2011

From Onset to Diagnosis – 6 Months (Cont.)

(Continued from post below)

Fourth Month
By month four, I had all but given up on the doctors in my local practice group.  They'd been given their chance to get it right--to diagnosis me correctly--and they failed.  At about this time, a family friend recommended a hospital in Santa Barbara (the Sansum Clinic) that, supposedly, specialized in hard-to-diagnose cases.  After discussing the costs with my wife, we decided to visit the clinic.  At that time, we didn't have a "plan B," so this was my best and only option.

I took a few days off from work and we made a small vacation out of it.  This would be our first road-trip with our daughter, and the trip luckily coincided with one of my better weeks.  Even now, the trip remains one of the few good memories from that pre-diagnosis period.

At Sansum I met with two doctors, a GP and a rheumatologist.  Ultimately, neither were able to diagnose me, but they were able to explain, clearly and understandably, why many of my concerns (auto immune disorder, Gilbert's syndrome, cancer, and others) were "ruled out."  In the end, this freed me up to continue my search for a diagnosis in other, new directions.

The other positive aspect of this trip was that the Sansum doctors were the first to consider M.E. as a realistic explanation of my symptoms.  They freely admitted that their knowledge on the subject was limited, but the GP explained that ME is not yet fully understood and that research is ongoing.  He also cited a couple of promising recent studies.  This would become important later.

Back home, I visited another rheumatologist in my home town.  This appointment had already been scheduled before the Santa Barbara trip and so, I figured 'why not?'  I didn't have any better ideas.  This doctor, ordered tests for stool samples to rule out celiac's disease and gastrointestinal parasites.  Both were negative.  I had struck out again.

Fifth month

Out of other ideas, I decided to stop looking for a doctors who could explain all of my symptoms, and simply find someone who could treat each one individually.  At the same time, I held out hope that one of these specialists would discover something that would explain all of the other symptoms.  And so I met with an Ear, Nose and Throat specialist (ENT) about my sore throats, and a pulmonologist, about my shortness of breath.

The ENT was useless.  Enough said.  The pulmonologist, at least, had some interesting theories.  He ruled out Valley Fever through blood tests, and ordered an exercise test that would evaluate my entire cardiovascular system while I rode a stationary bicycle.  In the end, I passed this test in the upper range of the expected.  And while the test caused me to "crash" the following day, at least I learned how far I can push my physical endurance.  As long as I am willing to put up with the subsequent crash (which lasted a week this time), it's nice to know that I can do it if I need to.

Around the beginning of this month, I also began to keep a daily health log, to see if I could determine what caused me to continually improve and then regress.  I gave myself a grade for my overall health each day, along with recording my daily diet, activities, weight, blood pressure, temperature, amount of sleep, nausea, and fatigue. (I still do this.)

Sixth month
By this time, I had a stack of lab results and medical technician reports almost a half inch thick...and nothing to show for it.  And so, I started researching M.E. because, well, we'd ruled out everything else.  I hit the blogs, message boards and books.  I read a book by a self-styled M.E. "specialist," Dr. Teitelbaum [edit: who I would later discover is not held in high regard] and soon knew without much doubt that I had M.E.  It was a huge relief to finally read accounts from people who's experiences matched mine so closely.  Above all, reading about the cyclical nature of M.E.'s symptoms was a bit of an epiphany.  Few other illnesses follow this mercurial pattern.

In the next several weeks, I researched treatment options and, eventually, found a local doctors' practice group that specializes in M.E.  I made an appointment.  By the end of the month, I finally had a diagnosis.

The diagnosis came with mixed feelings.  Gone was any possibility that this was all some big misunderstanding--that there was a simple diagnosis, and simple cure, that we had all overlooked.  But at least I could finally move on to the next phase...treatment.

(More on my doctor's diagnosis in the next post...)

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