Meanwhile, at the rheumatologist's office...

Have you ever seen the show Mystery Diagnosis? In a nutshell, it’s a documentary/reality TV show that tells the story of one person’s search for answers with respect to their health problems. It’s a gripping show, because the conditions profiled are always severe, even life-threatening, and there’s always a solution. By the end of each half-hour segment, the mystery is solved, everyone is relieved, treatment is commenced, and the patient gets to enjoy a normal life.

After 16 years of intermittent symptoms, some phases of which were so disabling that I doubted my ability to continue working full-time, I was hoping yesterday that I’d get my Mystery Diagnosis. I was glad that I’d arrived at the rheumatologist’s office early, because I felt so overwhelmed by emotion as I checked in that it took me a quarter of an hour just to settle down and collect myself.

Generally speaking I don’t allow myself a lot of freedom to feel the feelings that my symptoms trigger. I do write about the subject, or sometimes talk to someone who cares, but most of the time I’m trying to push through the fatigue, pain, weakness, and other symptoms that come and go, so that I can carry on with my life. I ignore it at work. I push through so that I can do shopping and housecleaning. I put it aside so that I can enjoy socializing with friends. But at some level I guess it builds up, because there was a large amount of sadness, aloneness, and frustration just waiting to break through.

Having hope put me in a very vulnerable position.

Eventually the doctor called me in. She was a pleasant woman, probably only a few years older than me. She went over my blood test results, the symptom list I’d typed in advance, and did a basic physical examination. Then she presented her findings.

I definitely don’t have lupus or rheumatoid arthritis. Which is good news, for sure. That means that whatever it is probably won’t kill or cripple me in any permanent way.

So what do I have? First she warned me that between 30 and 40 per cent of patients who see her for aches and pains leave without a specific diagnosis. The field of rheumatology deals with a few well-established syndromes, but there are many constellations of symptoms that don’t fit neatly into any particular diagnosis. No offence to rheumatology, but one third of patients leave with nothing but more questions? Seems to me like someone needs to hurry up with the research and figure out what’s going on, because that’s not a very good track record for the specialty.

The furthest she would go was to “suggest” that I might have fibromyalgia, with the emphasis firmly on “suggest”. Due to my place of work I know a little about fibromyalgia (FM) already. Some doctors diagnose it based on the classic criteria: 1) widespread aches and pains lasting more than three months and 2) at least 11 of 18 specific points on the patient’s body must be tender when pressed. Even given those two criteria it is a fuzzy-edged and often-disputed diagnosis. Two physicians who examine the same patient will often disagree about this diagnosis.

Another way doctors will diagnose FM is to use it as a garbage can umbrella term for any longstanding aches and pains that don’t fit neatly into another diagnosis. Considering that exactly one out of the eighteen FM points on my body was only slightly tender when pressed, I suspect that this doctor was using the latter methodology. In other words, she knew that I wouldn’t be satisfied walking out without any diagnosis, so she gave me this lame one as a peace offering so that I would leave quietly.

Imagine that you go to the doctor with red spots all over your body. The doctor tells you authoritatively “You are suffering from Circulae Scarlotum” or whatever the Latin translation of “red spots” is. You feel much better because you think this means the doctor has it all in hand, but really all he’s done is tell you in another language that you’re covered in red spots, which leaves you no further ahead. Not every diagnosis is inherently meaningful or helpful.

I have to give credit where credit is due: she was very warm, friendly, and informative. Relative to many doctors I’ve seen, she was generous with her time, explaining things to me that she must have explained hundreds of times before without any hint of impatience, and answering my questions without a trace of annoyance.

But here’s the most disappointing part: she gave me no treatment options whatsoever. No medications. No further referrals. Just advice to do moderate exercise and keep up with my yoga practice. So in that sense I’m no further ahead than before. I would have been happy to leave without a diagnosis but with a prescription for some kind of painkiller that wouldn’t completely bugger up my stomach. No such luck.

*sigh*

Anyway, I’m not giving up just yet. I made an appointment to see my naturopath on Thursday. I think it’s been five years since my last visit. He’s been my N.D. since 1993, and although his methods produce slow, undramatic results, he can often help me with problems that fall outside the scope of allopathic medicine. So, I’ll see what he has to offer.

In the meantime I’m feeling a little let down, but I’ll get over it. I’m not a giver-upper.