Friday, July 18, 2008

The Road to Diagnosis

"I'm taking a nap."
For more than a year, my only symptom was fatigue. I should have trusted my instincts (yeah, that’s the refrain of this song): even when I exercised, instead of feeling better and getting an energy-endorphin rush, I would become completely exhausted and have to rest/sleep for 10 or 12 hours or more.

In June of 2007, sharp chest pains and breathlessness finally drove me to the doctor for help. When I coughed or sneezed, the pain was blinding. I could not find a comfortable place to sleep. It felt like bone pain, not heart or chest pain. Even though the pain was behind my right breast, so localized I could pinpoint it, my doctor ordered a chest X-ray and CT scan to rule out a heart attack.

She then declared a diagnosis of “pleuresy,” which didn’t sound right to me. And yet, it was impossible to prove (or disprove) and difficult to treat. I was sent home with a prescription for painkillers and a caution that stamina would return very slowly. The chest pains subsided for awhile but the stamina never did return.

In September, I was back at the doctor with the same complaint. The pain was excruciating. When I laid down, I felt like I was laying on a baseball. This time she ordered a bone scan, which revealed a supposedly conclusive diagnosis of “costochondritis.” Huh? Another rather strange, vague diagnosis, and difficult to treat.

I was given strong anti-inflammatories which did absolutely nothing for me. Again, the pain eventually subsided but the stamina never improved.

Over these same 4-5 months, my graphic design business had dwindled down to almost nothing. I'd lost my biggest client, and there was no way I could possibly make myself presentable and knock on doors to hustle another account or two. I was down to one monthly job for one client, and every month I spent another large chunk of my savings just to meet living expenses. And I didn't all... about anything.

In October 2007, I suffered a sudden, crippling back pain that had me dropping to the floor, gasping in pain. I was carrying a box that was large and awkward, but not particularly heavy, maybe 15 lbs. I saw my doctor the next day and she rather testily informed me that, short of repeating expensive tests, there was nothing she could do for me. She sent me home and told me to take Aleve, an over-the-counter pain reliever. At this point, she was losing patience with me, and I think suspected that I was just trying to get prescription narcotics from her.

I took Aleve until I was literally sick from it, without any relief from the pain, and asked for a referral to an orthopedist.
I waited, in agony, nearly a month for that appointment. My parents celebrated an anniversary in that time; I drove the 130 miles to be with them, but every bump in the road was an agony. A couple weeks later, I made the same trip to join the family for Thanksgiving. I was in so much pain the whole time, I look back and can't believe I made that trip twice.

I've had a fair amount of back pain over the years, but nothing on this scale; I don't even have the vocabulary to describe what it felt like. When I finally saw the orthopedist, I told him about the blinding back pain and then said, "now I want to tell you about a couple other things, and you can decide if it's relevant or not." And as I related my two experiences in June and September of stabbing chest pains, I thought that I could “see the wheels turning.” I had finally found a doctor who was (a) listening to me and (b) believing me.

"We know what's wrong."
He ordered a *CT scan which showed "numerous lytic lesions," and then ordered an MRI to confirm what he suspected. In less than a week, I had a conclusive -- and this time, correct -- diagnosis: Multiple Myeloma, a rare blood cancer that attacks bone and bone marrow.

I may be the first person ever to weep with relief at a cancer diagnosis. There really was something wrong with me! And the reason for the back pain: an excruciating compression fracture as a result of weakened bones. You've seen those slow-motion videos of when a building is dynamited and the stories "pancake" down on top of each other? That's a pretty good visual for a compression fracture. I lost an inch in height as a result.

It is so easy, convenient, typical to assume that fatigue is a symptom of depression - especially in women. But in my case, it turns out I wasn't tired because I was depressed, I was depressed because I was tired! And I was especially frustrated that a female doctor did not seem to believe me or take my complaint seriously.

I'm sure the original GP is afraid of a **lawsuit. I have never heard another word from her, though she was my doctor for more than a decade. Not even a "How ya doin?" phone call.

Hindsight blah blah blah, if you feel your doctor isn’t listening and/or doesn’t believe you, DON’T WAIT SIX MONTHS... get another opinion, right away. And change doctors.

*I later found out that the original CT scan from June also showed these bone lesions, but were not noted by the radiologist.

**There's really no such thing as "medical malpractice" in Indiana. I was told this by four attorneys. One confided that they take less than 2% of the "med mal" cases they review; of those few cases, less than 15% ever reach a settlement. The average wait is 4 years, and the average settlement is less than $20,000.
If you're going to get misdiagnosed, or have the wrong limb operated on, make sure you move to another state first.

1 comment:

Margaret said...

If I weren't a U.S. citizen and hadn't seen "Sicko" (!), your story would seem too incredible to believe. In fact, it may be one of the worst that I have read so far even on the myeloma patient lists...hmmm, I'm sure that makes you feel MUCH better. ;-) Seriously, though, I hope things pan out for you (that blasted DieSuckah comes through, etc.).

Anyway, I wanted you to know that I love your attitude and am enjoying reading through your blog. Plus, it sounds as though we have a similar sense of (quirky) humour. And similar political beliefs...

Well, take good care and keep bloggin'!

Margaret :-)
the curcumin-taker with SMM, also a cook and baker...
in Florence, Italy