Initial Consult – Part 2

What should a person expect at their first appointment with a rheumatologist?  Prior to the appoinment, there’s quite a bit of paperwork – that’s covered in part 1.  Both of my the rheumatologists mailed the paperwork to me to complete beforehand, with the promise that my exam would be cancelled if I arrived without the paperwork.  Fair warning – that paperwork is important.

 

Arriving half an hour before your scheduled appointment is frustrating.  The doctor really isn’t keeping you waiting, though.  First all your paperwork is placed into your new chart (or, I suppose, rushed through data entry if the office is computerized).  Then the doctor takes time to review your information before meeting you.  Finally, then, it’s time for the exam.

 

Physical Exam

When you’re taken to the exam room, the doctor should review the paperwork with you, clarifying and confirming the information you provided.  Based on that info, the doctor will have ideas about your possible diagnosis.  He’ll ask you to clarify anything that’s not clear and likely scribble little notes all over your paperwork.  Then he will examine the body parts that you’ve indicated are a problem.

Your referring doctor should have sent a copy of recent lab results, and the rheumatologist will review them.  Most likely you’ll have your blood drawn again, and the RD will order additional tests.  It’s probably a good idea to ask the technologist who draws your blood to please send you a copy of the results (you’ll need to sign a release).  If your eventual diagnosis results in an ongoing relationship with the rheumy, you’ll be getting lots of bloodwork, and it might be nice to have your own file/notebook with all the reports.

At your initial appointment, you’ll probably have x-rays taken (many rheumatologists employ an x-ray tech and have a machine in the office).  X-rays will show if structural damage has already occurred, and these pictures will be used as a base-line to determine whether future treatments are effective (the goal is no new damage).

X-rays don’t show inflammation; they only reveal whether damage has already occurred.  MRI is more effective than x-ray in showing what’s currently going on, however this technology is expensive and many insurance companies won’t cover it.  It’s probably not a good idea to introduce yourself to a new doctor as someone who’s going to be a demanding PITA.  Just go along with whatever tests the doctor orders – at least this first time – unless there’s a compelling reason to do differently.

 

Once the exam is complete, your doctor should have an idea of what your diagnosis is.  However, that is not always the case.  Sometimes the rheumatologist can tell that there’s something autoimmune happening, but be unable to distinguish exactly which disease you’re dealing with.  Since many types of arthritis have identical treatment plans, an exact diagnosis isn’t always necessary.  We WANT to know what’s wrong, but it’s more important to begin treatment. Given time, the right diagnosis will appear.  Trust your doctor, and work with him.

More information about what to expect at this initial appointment can be found in a thread pinned to the top of the Arthritis Foundation’s RA Connect forum.

Initial Consult – Part 1

What happens when you get sick and your doctor refers you to a specialist?  Sometimes you feel like you’re the ball in a pinball machine, bouncing this way, then that.  “Go here for this test, there for that test, then see this doctor who will send you somewhere else for more tests.  And here’s a referral to another doctor who will want more tests.”  

It’s frustrating!  If it will help you to know what to expect when you’re referred to a rheumatologist, read on…

A rheumatologist will schedule 1-1/2 to 4 hours for your initial appointment – ask when you make your appointment how long you should expect it to take.  Get a babysitter, if you have children. This is too long an appointment for your kids to have to be at the doctor’s office with you.

Paperwork
When there’s a lengthy waiting period between your PCP’s referral and your initial appointment with the rheumy, you can request that the office mail the paperwork to you.   You’ll be happy to not have to rush through it in the waiting room. (Tip:  If you take the extra time to type your answers on the paperwork, the doctor’s front-office staff will be thrilled to not have to try to decipher your penmanship.)

A rheumatologist needs tons of information to make a diagnosis – that’s probably true of any doctor.  If you’ve never compiled a detailed medical history, now is the time.  Once you’ve done it, you’ll never have to search for the information again.  It’s worth taking the time to do it right.  It took me days to gather all my information – I even wrote to aunts, uncles, and cousins for the big picture (and learned that there is a history of a few genetically-linked diseases in my family, but nobody had been telling anyone else about their doctor’s appointments).

I’m on my second  rheumatologists. There’s very little that they didn’t both ask about, and based what others have indicated, it appears that other rheumies want similar information:

Basic Info
Name, address, date of birth, and insurance information are obviously required. The RD will also need to know who referred you (not just because doctors get paid more for a consultation than for patients who decide on their own who to see). I highly recommend including your referring doctor’s complete name and address. If you say “Dr. Doe” your records might end up at any Dr. Doe’s office. If you say, “Dr. John A. Doe, Greatest PCP Clinic, 1234 Main Street, MyTown” there’s more chance of your referring doctor actually receiving a report.

Symptoms

  • Briefly describe your present symptoms
  • Approximate date symptoms began
  • Diagnosis
  • Previous treatments for this problem, excluding medication (physical therapy, surgery, injections)
  • Do you have an orthopedic surgeon
  • Other doctors you have seen for this problem

Social History/Household

  • Marital status, number or people in household, their ages
  • Occupation? Number of hours worked per week?
  • Do you live in house/apartment
  • Do you have stairs to climb? How many?
  • Who does most of the housework? Shopping?
  • Are you receiving disability? Applying?
  • How many cups of caffeine per day?
  • Alcohol use/amount? Tobacco use/amount? Street drug use/amount?

History – Biological Father/Mother/Siblings/Grandparents
(If something significant shows up in cousins, I’d make a note of that, too)

  • Cancer
  • Seizures
  • Stroke
  • High Blood Pressure
  • Anemia
  • Kidney Disease
  • Alcoholism/Drug Addiction
  • Asthma
  • Gout
  • Lupus (SLE)
  • Rheumatoid Arthritis
  • Psoriasis
  • Tuberculosis
    Leukemia/Lymphoma
  • Blood Clots
  • Heart Problems
  • Bleeding Tendencies
  • Kidney Disease
  • Diabetes
  • Goiter
  • Colitis
  • Ankylosing Spondylitis
  • Arthritis
  • Osteoarthritis
  • Osteoporosis
  • Other

Personal Medical History

  • Date of last tetanus shot
  • Date of last pneumovax
  • Date of last TB test
  • List previous operations type/year/reason
  • Do you have a history of any of the following illnesses: Cancer, leukemia, lymphoma, seizures, epilepsy, bad headaches, stroke, blood clots, cataracts, pneumonia, asthma, diabetes, arthritis, rheumatoid arthritis, osteoarthritis, childhood arthritis, psoriasis, osteoporosis, heart problems, stomach ulcers, colitis, rheumatic fever, kidney disease, lupus, ankylosing spondylitis, jaundice, nervous breakdown, gout, goiter, gonorrhea, syphilis, herpes, Chlamydia, HIV/exposure, fractures, other significant illness or arthritic conditions

Medications

  • List present medications, dose per day, taken since (date),   Helped: a lot/some/not at all
  • Past arthritis medications (lists of otc, nsaids, dmards, biologics, and narcotics – mark those that you’ve tried)
  • Allergies: medication/reaction

System Review
This means that the doctor looks at how all the systems in your body are working:  eyes, ears, nose, mouth, throat, neck, stomach and intestines, blood, kidneys and bladder, heart and lungs, muscles/joints/bones, skin and hair, nervous system, general…

 

Knowing the background that the doctor will ask about should help you be prepared to complete the lengthy paperwork required for your first appointment with a rheumatologist.  This post was getting too long, so the physical exam is covered in my next post.