Monday, March 15, 2010

The More They Test, The Less We Know

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?


Lori S. Kagan said...

I say this knowing I really cannot fathom anything you're going through and how incredibly frustrating, exhausting, inconvenient and painful it is/has been. But I think I would vote for giving up the testing for a while and concentrating (to the extent you can given everything) on something you love to do - in my case it would be writing poetry and doing a lot of reading, but whatever you love to do and find pleasantly distracting and rewarding. After all you've been through, you deserve a break from the poking and prodding!

Anonymous said...

Agreed. Testing just to test is very expensive and obviously is hasn't helped much. Doing something fun and entertaining to get your mind off of your troubles would be a good change. Planning your weeks around doctor visits is very time consuming and if all are mostly negative then maybe doing something nice will take your mind off of these issues.

queenofoptimism said...

As you know, I battle with this question myself. My only advice is to consider what limitations you have and how another dx may improve things. Will another test, doctor, practitioner help your quality of life and your personal safety? Can one of your existing diagnoses account for some of your symptoms? Is there some new treatment(s) you can try based on what you already know? Are your doctors/practitioners concerned for your safety with or without treatment? That's what I ask myself.

Many **hugs** No matter what, please take it easy on yourself.

Christy said...

Wow.... I can't say I'm in the same position as you at all, but since getting the flu shot on Oct. 30 of last year I've been through hell too! I've had numerous tests, all come back negative, but I've lost out on much sleep over the anxiety and physical symptoms no one seems to have a satisfactory answer for. I'll be following you on here, because I've never had such an 'illness' (I'm wondering if it's just depression, but it started abruptly after that shot) but I'm in the process of moving to San Diego to see if a relocation to a sunnier place and therapy will help me. Currently dealling with deep fatigue too, only I can't sleep during the day, if I get 6 hours a night, it's very good. We'll see...

Unknown said...

I'm going through the same thing, weird symptoms like yours and test after test with nothing specific yet. I just had a carotid doppler and a thyroid sonogram again so we'll see if the Dr. can figure anything out! Good Luck, I'll be following your SAGA!!!