I'm starting to think that Doctor D had a point when he wrote that sometimes, when you have a mystery illness, at some point, it's time to stop the testing because you keep turning up red herrings that require yet more tests that risk causing harm all by themselves.
It's been a frustrating week.
The biopsies from my colonoscopy and endoscopy all came back benign, including the polyp. Good news, I know. But no answer on what was causing the pelvic pain and then the bloody diarrhea. My GI doc says that happens sometimes. And if the bleeding recurs, perhaps they'll 'scope me faster in hopes that they can find the cause. I follow up with him on April 14.
I got a call this morning from my internist with the results of my brain MRI and MRA. I do not have a copy of the radiologist's report yet, but she said that other than the two foci that were discovered on last year's brain MRI, there wasn't anything significant. (I guess the report does point out mild to moderate sinus disease, but I already knew about that.)
The MRA, which is essentially an angiogram via MRI, may have shown something. Or maybe not. And even if it did show something, it doesn't have anything to do with the bizarre symptoms I've been having since late February.
My internist says the MRA appears to show an aneurysm in my carotid artery. If it even exists, it's teensy tiny. Literally. The radiologist said it was about 2 millimeters. Seems like it's about as small as it can be and still be visible and measurable.
My internist says she has had other patients who have had what looks like a carotid artery aneurysm on an MRA, and it turned out to be nothing. But, just to be "safe," she's referring me back to the neurosurgeon I've seen previously for back problems.
For such a small aneurysm that isn't causing definite symptoms, it's apparently typical for doctors to order "watchful waiting" and the patient just keeps repeating the test every six months so they can monitor it.
In some cases, the doctor will fix the aneurysm surgically. My internist thinks it's unlikely that mine, if I have one, would require that at this point.
Meanwhile, I'm wondering what, if any, benefit I'm getting from doing these tests, these endless rounds of tests and visits to various specialists. They suck up my time and (limited) energy. They're a huge drain on our finances, even though I'm lucky enough to be fully insured. Meanwhile, who knows how much radiation I've been exposed to these past few years with the various CT scans and x-rays?
As Doctor D says, "Even perfectly correct work-ups carry real risks and harm real people." He advocates that sometimes "benign neglect" is sometimes the best answer. (I suspect that the more modern term is "watchful waiting." Although then again, the modern watchful waiting involves lots of monitoring tests. So maybe not so much.)
So what would you do? Would you just accept that your illness hasn't yet been discovered and concentrate on improving quality of life? Or would you keep making the rounds of doctors and tests in the hopes of finally attaining an actual diagnosis?
9 months ago