When I see my doctor, he doesn’t assume that I’ve reported every symptom; he takes what I’ve reported, looks for patterns, and asks questions to try to fill in the missing pieces so he can get an accurate picture of what’s going on.  I thought all doctors were trained to do that.

Some are obviously better at it than others.  Throughout her high school years, my niece saw pediatric cardiologists and pediatric neurologists.  Now she is in her second year of college and seeing an internist.  Last week I heard that she is trying to juggle classes and doctor appointments, and they suspected Crohns.  Crohns is linked to the spondyloarthropathies.  My niece has Raynauds and symptoms of Crohns.

I emailed my niece a few links so she could read about Crohns and some of the related arthritic diseases.  She called me after reading them.  Joint pain?  Nobody ever asked her about joint pain.  She’s had joint pain since she was twelve years old!  Knees, hips, and ankles are affected, sometimes shoulders; she has long-term, bilateral joint pain.  She doesn’t think to say anything about it; nor does she make an issue of the fact that she breathes regularly.  When something is always there, you don’t think to mention it.  She just buys ibuprofen in Costco-sized bottles and tries to make the best of things.

Autoimmune diseases such as RA and JIA have a genetic component.  It amazes me when this link is ignored.  I have Raynauds and RA/USpA.  My daughter has Raynauds and ERA.  We believe that my father had undiagnosed autoimmune arthritis.  My niece has Raynauds and a variety of other health problems that could all be explained as complications of JIA.  Even without our family history, it seems like the combination of Raynauds with other symptoms linked to autoimmune diseases would make a doctor include JIA in his list of possibilities to be investigated.

After a long talk with my niece, I’m fairly sure that she would benefit from a thorough exam by a rheumatologist.  Now she needs to figure out how to track symptoms (after figuring out which symptoms to track), record what she does that makes things better or worse, any other pertinent data (without knowing what might or might not be pertinent), and respectfully present information to her doctor in a way that will make him consider whether or not she’s had undiagnosed JIA for the past eight years.

It is astonishing that no doctor has ever asked the right questions to put the pieces together.  Unbelievable.

Suggestions on what data my niece should track,
and how to artfully feed her doctor the right information
so  that he can accurately determine whether or not
she should be referred to rheumatology
would be much appreciated.
Message me if you’d prefer to remain off-the-record: warmsocks.blogquestions@gmail.com

Computers in the Exam Room

Does your doctor use a computer in the exam room? Some people think that computers are a great way to keep track of patient information.   Others see some advantage, but problems in the implementation.  There are also a few Luddites who oppose this change simply on principle.   I’ve had good experiences, and bad experiences, and believe we have a long way to go before computers are as helpful as they could be.

There are two separate issues.  The first one is quite significant:  is there software that will do what doctors need it to do?  The other issue is how computers affect the doctor-patient relationship – definitely another significant factor!

In every other field, the best way to buy software is to define what you need to do, then look for programs that will meet that need.  To date, it appears that the accountants are shopping for software to meet their billing needs, without consulting physicians to determine what doctors want or need.  Not being a doctor, I can’t really elaborate on that, but when doctors and nurses spend more time cursing the software than they do seeing patients and documenting the encounter, there’s obviously a problem.

As a patient, I’ve seen that computers in the exam room have an impact on the doctor-patient relationship.  The doctor’s behavior is important.  So is room setup.  Both of these issues need to be considered.

One doctor I saw had exam rooms set up like this:

This is obviously a bad way to arrange a room.  There’s a huge desk acting as a barricade between the doctor and the patient.  When the patient is sitting in the chair, the doctor must look away from the patient in order to see the computer screen.  No matter how caring a doctor might be, the patient isn’t going to perceive it when the doctor steps into the room, nods and waves at the patient, sits behind a desk to face the computer, and focuses on data entry.  In this room configuration, the computer literally comes between the doctor and the patient.

In contrast, I’ve been in other exam rooms that handled the computer’s presence better:

Both of these room configurations allow the doctor to sit with the patient.  No computer comes between them.  My preference is for the room on the right, where the doctor is still 45° to the patient when looking straight at the computer screen.

These illustrations aren’t the only types of rooms I’ve seen.  At Children’s Hospital, my daughter’s rheumatologist sits at the end of the exam table and talks with her.  The computer is clear across the room, and data entry is done by a scribe; at the end of the appointment, the doctor clicks a few buttons.  The computer seems to be a tool that helps provide prescriptions and information, not a deity to be worshipped by everyone in the building.

About eight years ago, I saw a doctor who carried a laptop from one room to the next.  At my first appointment, he grinned and said that he found it easier to keep his notes on computer instead of paper.  It didn’t affect the exam or our rapport.  Everything seemed normal, except that he typed his notes instead of handwriting them.  It worked well.  That would be ideal (and should be easier today, with tablet computers).

My favorite way of handling computers, however, is the doctor who keeps the computer in his office and out of the exam room entirely.  He obviously pulls my file up to refresh his mind before coming into the exam room.  We talk and he does an exam, then he returns to his desk to type his notes while I dress, and there’s a prescription waiting at the front desk by the time I check out.  It seems the most efficient, and the computer isn’t at all intrusive.

The worst computer setup I’ve ever experienced had the computer behind the doctor so that he had to turn his back to me.  Or maybe that was a good thing – I was able to read over his shoulder.  When he typed, “no pain on movement” I was able to ask, “Why would you say that?”  He was astonished (1) that I was looking over his shoulder, (2) that I questioned him, and (3) that he got it wrong.  He had asked if I could move my wrist, not if it hurt to move it.  Huge difference – and we never would have known if I hadn’t looked at what he was typing.  It would be incredibly easy for doctors to project their computer screen onto a wall so that the patient could see what’s being said.  Patients might not feel quite so ignored while doctors are typing, and we’d know that the information going into our chart is accurate.

As more doctors switch to electronic medical records, patients will insist on the computer being a tool to help, not an interference.  We will refuse to see people who make us feel like saying My Doctor is a Computer!


Share your experience.  Do you like computers in the exam room, or does their presence cause problems?

I Am a 60 Year Old Man?

Referrals to new doctors are nerve-wracking.

I’d considered various scenarios, and thought I was ready for anything, however, I hadn’t expected the nurse who roomed me to ask, “When were you first diagnosed with psoriasis?”

Puzzled, I looked at her and said, “I’ve never  been diagnosed with psoriasis.  My doctor said this rash might  be psoriasis, but he wasn’t sure.”

The nurse raised her eyebrows and eyed me like I was clueless.  Then she showed me the charge slip that the doctor would complete and pointed out the lone word “psoriasis” on the “reason for visit” line.  In my book, that only means that the person who scheduled the appointment made a mistake.  Words like “possible” and “suspected” would easily have fit in the allotted space, but were omitted.  Since I’m  not the one who did the data entry, I can hardly be blamed for the error.  And, while I suspect that I might have psoriasis, there are a few pretty good arguments against it.  That’s why a doctor does the diagnosing instead of the patient.

Not a good start to the appointment, but not the end of the world.  When the doctor came in, I was surprised to discover that he’d already looked at my paperwork.  I was slightly off-balance from the nurse thinking I had a definite diagnosis.  For some reason, I thought the referral was straightforward, so didn’t anticipate the doctor asking, “What can I do for you today?”

A few options rushed through my head:

  • doesn’t the referral form say what you’re supposed to do?
  • I’d love to have you tell me that I don’t have discoid lupus
  • tell me that this isn’t scleroderma, either
  • convince me that I definitely don’t have psoriasis, which means I don’t have PsA, which means my daughter doesn’t have PsA

Not knowing anything about this dermatologist, I silently repeated my new-doctor mantra:  “Don’t come on too strong; start off slowly; build trust,” and finally asked, “Can you help me get rid of this rash?”

How frustrating that patients aren’t supposed to have any ideas.  What a waste of time that so many doctors find it annoying for patients to have done any research.  I’d have loved to say, “These weird coin-shaped things all over my body are driving me crazy, and whatever is going on with my scalp is driving my husband crazy (because I keep scratching them).  I don’t think I have discoid lupus, because even though the shape and size are right, the location is wrong.  Despite Raynauds and peripheral neuropathy, I don’t think it’s scleroderma because my SCL-70 antibodies were low last time that test was run.  Whatever these coin-shaped things are, I think there’s something else going on too, because I also had a different rash that looked exactly like photos I’ve seen of inverse psoriasis (but it disappeared with one application of the steroid cream, so you can’t see it).  Is it possible to have psoriasis with no scales anywhere, and also have this completely unrelated rash, too?”  But apparently patients who do online research are annoying, so I kept all those thoughts to myself.

After looking at this odd rash, the doctor declared that it’s not psoriasis.  Neither is the stuff on my scalp.  He looked a little puzzled, and said, “It looks like nummular dermatitis.”

Who Gets Nummular Dermatitis?
This skin problem is more common in men than in women. Men tend to have their first outbreak between 55 and 65 years of age. Women are more likely to get it between the ages of 15 and 25 years.

Ah, now I know why he looked puzzled.  Time to do some research, make a list of questions, and hope it doesn’t annoy this new doctor that I want to understand what’s going on.  My first question will be, why do I have something that’s not common in my age group or gender?

I now have a topical steroid cream, steroid ointment, steroid solution, and am desperately feeling the need for another cortisone injection in my shoulder.  I think I’d rather just go back on prednisone – which, in addition to making my joints feel better, should clear up this rash.  Unfortunately, I think I need to know this doctor a lot longer before I can just ask if pred is an option.  I sincerely hope that I never again need another new doctor.