Tuesday, March 3, 2009

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.


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.


SoMi's Nilsa said...

If you feel a diagnosis is incomplete or a treatment plan is not suitable, seek a second opinion. You need to have some options and feel comfortable with a treatment plan!

NicoleB said...

Keeping my fingers crossed that you find out what it is!
At least she was friendly and "tried" to find out what's going on.

Did you ever try someone that's maybe specialized on Asian medicine like Acupuncture and such?

The standard answer I got from Docs when I went for my Backpains was make more sports.
Later it was found out that two of my bones in my Vertebrae (what do you call those in English?) are crooked.
Two Therapies helped longer terms so far. One was Accupuncture.

Best of Luck to you!

Keera Ann Fox said...

Meh. Reminds me of every time I go to the doc's with something, they tell me it's a virus. I'm surprised your doc didn't try that one with you! It could be. Ever been tested for Lyme Disease?

Anyway, get a second opinion. Maybe try an allergy specialist, instead.

Warped Mind of Ron said...

Well if you've watched that medical mysteries show you are right on track. How many times do I watch that show where Dr's will give out lame excuses time after time until the patient, that never gives up, calls more and more doctors. Finally they hit a doctor that seems to care or has a brain and answers are found. I usually end up yelling at the TV when a person suffered for 10 years and a little shot fixes everything. I'm screaming "Give those idiot Dr's Hell!!!" I want to see the ones that blew the patient off apolagize for missing the diagnosis for so long.

San said...

How frustrating! I hope the naturopath has something for you. Have you thought about seeing an osteopath?

Aurora said...

Maybe it's fear that makes you vulnerable, more than hope? I would hate to blame Hope :)
From Hope: Luckily, you don't have an identifiable bad disease. Yay! So you have time to find out more about it. Also, you live in Canada, so you have the added benefit that getting second opinions is free. Best wishes for the Naturopath visit!

p.s. Red Spots? Why, that's evidently puncta rosea!

Sparkling Red said...

Nilsa: I'm not itching to get a second opinion because I feel this Dr. was quite thorough. There probably isn't a name for my cluster of symptoms. That doesn't mean it won't ever have a name, just that medical science hasn't catagorized everything yet.

Nicole: I've tried accupuncture but it's never been terribly effective for me. When I see my naturopath he'll give me homeopathic medicine, which is helpful in my experience. And incidentally the individual bones are called vertebrae and the whole structure is the spine. :-)

Keera: Yes, I was tested for Lyme disease and it was negative. I may go for allergy tests if my naturopath can't help me sufficiently. I've had food and environmental allergies tested before, but that was a while ago and things can change.

Ron: That's exactly what I do when I watch that show! Usually they only interview the Dr. that solves the mystery. One time they actually had a g.p. on the show who was the one who let his patient suffer for years with a huge mass in her lung. I was shocked that he would show his face on national TV and admit to screwing up so badly. Would he have any patients left after that?

San: There's no such thing as an osteopath in Canada. My massage therapist does cranio-sacral therapy, which is osteopathy without the medical degree, so far as I understand it. I love the cranio-sacral work and respond very well to it. I go once or twice a month and it helps a lot.

Aurora: I knew I could count on you to provide the Latin translation! I tried Babelfish but they don't have a Latin translator and I couldn't remember much from grade 10. ;-)

Scarlet said...

I'm glad you don't give up easily. I can see why you feel let down, but I was thankful to hear what you have is not life-threatening or crippling. Still, you deserve answers and I hope your next doctor's visit is the one who solves the mystery.

Stay strong, girl friend!

sallymandy said...

Wow, I'm sorry. That sounds discouraging. Keep up the good work.

I think I'd do what Nicole suggested and look into Chinese medicine, too.

LL Cool Joe said...

That sounds very frustrating but at least it isn't anything life threatening.

I hope you do get some answers though and some kind of treatment.

I never go to the Doctor's so I haven't got any advice, but I do hope you get some help somewhere else.

Good luck.

LL Cool Joe said...

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Anonymous said...

At least you didn't get diagnosed with something horrible. That's a silver lining.

jameil1922 said...

one out of the eighteen? warm and friendly does not make up for that "diagnosis." what if there was some person not as quickly able to toss out silly diagnoses? very irresponsible.

Sparkling Red said...

Scarlet: Thanks! I don't have a lot of faith in allopathic medicine when it comes to providing answers. MD's have let me down more than they've helped me over the years.

Sallymandy: I see some good healing right in front of me: a kitten wearing a frog hat. :-) Don't they say laughter is the best medicine? That's the cutest thing I've ever seen!

LL Cool Joe: I don't know why I continue to give doctors a chance. They seem to be able to help a lot of people, but they can rarely help me.

Unsigned: Yes, I guess the 30% that walk out without a diagnosis are actually the lucky ones.

Jameil: I don't blame the doctor individually - I blame the limitations of Western medicine. It has a long way to go.

Kate said...

I have a friend that struggles with two chronic diseases - both of which are diagnosed. I had learned so much from him in the last two years about taking care of myself. I tend to get worn out (as in non-functioning) if I let myself get too tired or overwhelmed or overworked. And I have to do alot of things in my routine to keep that from happening. Most of it has to do with healthy lifestyle, good rest and giving myself a break when I need it. I don't even try to push through it anymore. I simply can't without serious repercussions.

With that said - you're on the right path - you take what she said and you move forward. You can rule out two diagnoses and then somewhere down the line - you'll see someone else who might have the answers. Acceptance is not the easiest thing in the world.

Dianne said...

I am very glad that at least 2 serious conditions were ruled out, that is part of an answer at least

I hope Thursday is a good appt.

Don't feel let down - good things are waiting for you :)

Karen said...

I am a little late to the conversation, sorry. I went through something similar when I had my first bought of Fever Of Unknown Origin. Basically to this day I suffer from an auto-immune disease which is actually named UNKOWN.


I have come to accept that body is a wild and crazy thing. Sometimes it doesn't act like it is supposed to. Thankfully I don't have daily physical pain or anything. But when the bad bouts hit, I end up in the hospital for a few days to a few weeks.

Good luck. I hope you get an answer.

Alex said...

No, a giver-upper you are not. What you are is a consistent source of inspiration to me, for various reasons. I don't comment much, but I wante to make mention how very much I enjoy your writing. Thank you for that.

Sparkling Red said...

Kate: I hear you. It's taken me years to come to terms with my limitations. Actually it's a lot easier now that my friends are getting older and feel less inclined to stay out till all hours of the night. I don't feel like I'm missing out on as much by getting to bed on time.

Dianne: Thanks :-) Thursday at my naturopath's office did remind me that there is a whole realm of wholistic remedies yet to be explored. I'm feeling very hopeful.

Karen: Yes, Grrrr! It is so frustrating not to be able to name the malady. Once we can name something we have more power over it. That's true in science, folklore, and psychology. "Unknown" just doesn't do the trick.

Alex: It's so wonderful for me to hear that my writing has been an inspiration. It's humbling, because I don't understand the mechanism behind it, but if I can take the challenges of my life and somehow transform them into something that can bring grace into other lives, then it's all worthwhile. Comments like this one bless my life with meaning, and other than love itself there is no greater gift.