Those preparing for their first consultation with a rheumatologist might wonder what to expect.  First you fill out reams of paperwork, then you'll have a physical examination. 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.  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.

Paperwork

A rheumatologist needs tons of information to make a diagnosis.

 

When there’s a lengthy waiting period between your PCP’s referral and your initial appointment with the RD, 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.  The first time I did this, it took days to find all the information (at that time I didn't have all my medical information in one place).  Once you've completed a detailed medical history, you'll never have to search for the information again, so it's worth taking the time to do it right the first time.

 

If you’re data-gathering and wonder what the doctor will ask, here is a combined list of the questions asked by both my 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.

 

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.

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 

           (click to enlarge)

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

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

Below is a copy of the System Review form from two different rheumatologists. As you can see, they ask for the same information, just in slightly different format.

      

                        (click each to enlarge)

 

 

Physical Exam

When you’re taken to the exam room, the doctor should review the paperwork with you.  Based on the information provided, 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.

Hopefully this will help you be prepared to complete the paperwork for your first appointment.   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.

I like people.

Usually.  The ones I don’t get along with tend to be people who are either stupid, or lack common sense.

There can be exceptions, and unfortunately I found one.  I was referred to a doctor who needs to be seen on an ongoing basis, and it hasn’t been a good experience.  Since people can’t be stupid and make it through medical training, this is unusual for me.  I’ve only ever had one other person providing medical care who I didn’t like.

This guy has pretty good credentials, and my PCP (whom I respect) recommended him, so I’ve tried to make the best of it.  I’ve learned about this disease.  I’ve talked to other people to learn what their doctors are like.  I go to my appointments prepared – but I dread going.

Then one of my favorite medblogs had Rules for Doctors/Rules for Patients posts (great read), and I realized that this just isn’t working.  It’s okay to find a different doctor.

Previously I've written about finding a new specialist.  There were lots of different things to consider, so it took a while.  I finally finished my research, but still needed to talk to my PCP about it – something that I was reluctant to do.  I like my PCP and don’t want him to think I’m complaining. “You know that doctor you referred me to?  I don’t trust him,” just doesn’t seem like the right thing to say.  And I wasn’t really sure how to bring it up.

Problem solved.  Yesterday I had an appointment with my PCP, and he brought it up – asked if I’d been back to the rheumatologist yet.  “No.  I’ve been thinking about finding someone different.”  Immediately he had the name of another RD and gave me a referral.  I’ve been worrying about this for months, and it turned out to be no big deal.

But he asked why.  I'd hoped to avoid that question.

So, why don’t I like the RD?

I don’t trust him.  I told him that I was allergic to vicodin.  I said that my throat was swollen and that I was having trouble breathing.  He could see that my neck was visibly swollen – that and accompanying rash are noted in my chart.  Do so many people lie to get drugs that I’m never going to be believed about this?  I didn’t want a painkiller, but he insisted on one anyway (and I get labeled noncompliant if I won’t take it).  I took the new painkiller (minimum dose).  The room started spinning; I crawled to the bathroom and spent the evening kneeling before the porcelain throne.  After a couple hours I was able to crawl back to the medicine bottle and there, in tiny print on the package insert, I learned that this medication is contraindicated in people allergic to vicodin!  When I finally got a response (see below), it was: if I couldn’t take the new med, then he’d give me a prescription for hydrocodone.  This man is trying to kill me!

 

 

Lack of responsiveness.  Immediately the morning following the painkiller incident, I phoned to let him know what had happened with his prescription.  Somehow I must not have conveyed the extent of the problem.  He didn’t return my call.  The third day, I phoned again and left another message.  Still no return call.  The fourth day I tried again, and eventually his nurse returned my call to say that if the puking and spinning room were unacceptable, then they’d give me the med that inhibits breathing.  Maybe I was better off without the return call.

 

Blame.  Talked to my PCP about the problem with the prescription.  He thought it sounded more like an overdose than an allergic reaction.  That doesn’t really inspire confidence in the RD’s prescribing abilities.  At my follow-up appointment with the rheumy I’d planned to ask about the meds, but he started the appointment by walking in the door and announcing, “It looks like you’re medication sensitive.”  No greeting, no eye contact – blamed me for his error even before he was seated.  Subject closed.  I’d sorta thought that an apology was in order.  For the med, for not calling me back…  Even if it was an overdose instead of an allergy, the company that makes the med says it shouldn’t be given to me.  I understand that it’s my fault that I took the stuff.  Believe me, I learned my lesson and will never again take any medication without learning about it.  However, he never should have prescribed it in the first place.

 

 

No Calls.  A lot of RDs welcome phone calls.  Or at least tolerate them.  Some even have guidelines:  call me if any of these things happen.  After learning that, at my last appointment I asked, “What circumstances would indicate that I should phone you before my next appointment?”  NONE.  He told me that there would never be any reason for me to call him before my next appointment.

 

While I would like to never call, I don’t think it’s realistic.  In the past it’s been normal for my only phone calls to my doctor’s office to be for scheduling routine well-child checkups for the kids, but there have been a few other calls:

• My son got kicked by a cow.  It broke his hand.  I felt this warranted both a phone call and a trip to the doctor.
• I cut off the end of my finger with a bread knife.  It was an accident.  I phoned to ask if the doctor could see me, or if I needed to go to Emergency.  He took care of it and didn’t even lecture me to watch what I’m doing.
• My 5-year-old snuck up on the other kids while they were playing baseball and got hit in the head with a bat.  I called to ask if the doctor needed to see him, or if I should just keep an eye on him.  I didn’t have to make a trip to town, was told exactly what to watch for, and given instructions to call an ambulance if needed (wasn't needed). 
• My weirdest call:  We’re studying anatomy and I wondered if the doctor’s office had a skeleton we could view.  They don’t have a skeleton, so I bought one.  It’s too tall to store in the coat closet, so we keep it in our bathroom.  Interesting conversation piece when company visits.

I don’t think that I’m one of those people who bug the doctor’s office with every little thing that comes along.  One of my kids’ files was archived because she never got sick and I somehow missed scheduling two well-child checkups.  Really, I don’t make a habit of bugging doctors.

 

But I was told to never call the RD, so I won’t.  Sure wonder why they’ve had my abnormal test results for a month and haven’t gotten back to me, but it’s not life-or-death.  I understand what the word never means.

 

I couldn't think of any short way to convey this to my PCP, and I'm not sure that it would even be appropriate.  There might be a good way to complain about person A to person B, but I don’t know what it is.  I took a deep breath, thought about it, but couldn’t do it.  If I had a problem with the care provided by my PCP (which I don’t), I would address it with him, not with someone else.  If I wanted to fix this, I would address it with the RD.  That doesn’t mean that I’m going to complain about him (at least not in a format where he’ll be recognized).  I just said, "He's an arrogant jerk and I can't stand him and I don't trust him so I feel like I have to research every med he prescribes before I can fill the script. I don’t think it's a good fit."  Which my doctor accepted.

He didn't have to think about it - knew right away who to recommend.  This new rheumy is on my insurance list, is closer to my house than the old one, is board certified, is a member of the ACR, does research, takes email questions, has privileges at my preferred hospital, has a practice partner who’s a professor of rheumatology at the medical school... Is everything that I think I'm looking for in a rheumatologist (even female, which I wasn't going to hold out for).

I dropped by the new office to make an appointment and pick up paperwork.  Okay, I’ll confess, I wanted to interview people in the waiting room.  The receptionist is nice, organized, efficient… and the doctor was visible - sitting in the back office, typing stuff into her computer.  This is a good sign.  I’m actually looking forward to seeing the rheumatologist, instead of dreading it.

“Thank you very much for allowing me to see this pleasant patient,” is the concluding sentence of a report sent to one of my doctors.  What interesting word usage!  Somehow I had the notion that one doctor writing a report back to a referring doctor would just summarize the testing that was done and interpret the results.  The addition of one little adjective makes me reflect back on that day and think, “That doctor was pretty nice, even if the tests weren’t so fun.”

I’ve read so many places that patients should keep their own copy of all their medical records, that I finally requested copies.  I’m not sure why the original in my doctor’s office isn’t sufficient, but if it’s in my best interests I can keep my own copies – of some things, anyhow.  I can’t for the life of me figure out why I should need records from 15 years ago, so just requested recent info.  It was interesting comparing the “official” progress notes against my own appointment notes.  I’m glad that I did it.  The same word turned up again: “O: NAD, pleasant female.”  Unless pleasant has become a code word meaning just the opposite, I think I like it.

And I’m wondering if adjective usage will change as more and more individuals ask to view their records.   Will doctors (or their scribes) be less inclined to make note of surliness, knowing that the patient might object to the comment?  Or note it more often if it’s a patient that they wish would go elsewhere?  Will they be more inclined to use positive words if they realize that it might make a difference in how patients view them?

My reaction to this puzzles me.  I always thought that I couldn’t care less what is written in my chart, as long as the doctor can figure out what’s wrong and come up with an effective treatment plan.  But I’ve discovered that I feel more positively about the people involved in my care who noticed that I made an effort to be nice, even when I didn’t feel well.

Hooray for adjectives!

In an ideal world, we would never get sick and never need to see a doctor.  Here in the real world – as those of us who have found our way to AF’s board have learned all too well – sometimes disease strikes and PCPs refer people to specialists.  It would be nice if the first specialist to whom we were referred was a good fit.  When it isn’t, how do we go about finding a new one?

If you are leaving one specialist in search of another, knowing why it isn’t a good fit should be helpful in finding a new doctor.  Maybe the travel distance is too great.  Maybe you and the doctor do not have the same native language and it hinders communication.  Maybe the doctor doesn’t listen to you.  Maybe you want to try alternative treatments and the doctor ridicules you for that.  Maybe you have a strong preference for one gender.  It could just be bad chemistry.  Or maybe your insurance changes and you are forced to go elsewhere.  Every person’s criteria will be unique.  The key is to figure out which factors are important to you, and do your research based on those that you think really matter.

Throwing darts at a list of doctors probably isn’t the best method to use in selecting a physician.  Especially if it’s someone you’ll need to see long-term. 

First, go back to your PCP and ask if your doctor could recommend someone else.

If, for some reason, that doesn’t work, or if you want to do some research on your own first, here are some things to consider.

·         Where is the doctor located?

·         Does this doctor take your insurance?

·         Does this doctor have privileges at your preferred hospital?

·         Is this doctor board-certified?

·         Where did the person attend medical school?  Residency?

·         What is the lead time for new-patient or second-opinion appointments?

·         After that, how long does it take to get an established-patient appointment?

·         Does the doctor see patients, or are patients farmed out to a PA or NP?

·         If a patient phones with a question, how long does it take to get a response? Are calls returned the same day?

·         Are special tests done in-house, or referred out?

·         Do you like the support staff?

·         Does the doctor take questions by e-mail?

 Since the results are more important than a party-game, it's important to do it right.

Location – How far will you have to drive?  Is the doctor ten minutes away, or three hours?  It might be worth driving farther for an excellent doctor.

Insurance - It makes sense to begin your search with doctors covered by your insurance plan.  Visit your insurance company’s website and do a search by specialty.  If there is only one local specialist in your insurance network, but you don’t like that doctor, then it might be worth travelling farther to find someone within your network, or it might be worth paying more money to see someone local that you really like.

Credentials – If board certification is important to you, then check the credentials of the doctor.  Some perfectly competent doctors choose not to be board certified.  Some doctors don’t have a good enough grasp of English to be able to pass the board exam.  Some doctors don’t stay current with new developments within a specialty, so are unable to pass the board exam.  If someone isn’t board certified, I’d ask why. Credentials can be checked at the American Board of Medical Specialties website.

The American College of Rheumatology has a doctor-finder feature that allows patients to search for member physicians. Obviously, ACR’s website won’t do you any good if you need a different specialty, but the AMA’s patient resources page includes a Medical Societies Directory.

Education – Physician training in the United States is different than in other countries.  If this is a factor for you, then find out where the doctor attended medical school.

Appointment Lead Time – Will you be seen in two weeks, or not for three months?  If the lead-time is lengthy, why?  A doctor might be backlogged because the person is such an excellent doctor that patients feel it’s worth the wait.  Or maybe the office is only open two days a week.  The reason for the wait is just as important as its length.  If the wait is lengthy, work with your PCP on interim treatment.

MD/PA/NP – I have nothing against healthcare providers who don’t have an MD after their name.  A PA or NP trained by a specialist probably knows more about that specialty than an MD in a different specialty.  However, there’s no point in doing all your research about a particular doctor, if that doctor will not be the one to see you.  If you’ll actually be seen by a PA or NP, then that is who you need to vet.  When phoning the doctor’s office, simply ask.  Some places will say, “The doctor isn’t taking new patients, but the physician’s assistant can see you.”  Other offices will say, “We don’t employ NPs or PA; doctors see all the patients.”

Phone Calls  – The receptionist will claim that the policy is to return calls the same day (or immediately the following morning).  Reality doesn’t always conform to policy, though, and existing patients are who will give you the real scoop. This is one of those questions that needs to be asked of patients in the waiting room.

E-mail – If being able to email your doctor is important to you, then that’s one of the criteria you need to consider.  Lots of doctors won’t do email because it’s not billable, even though email could often be quicker than returning phone calls.

In-House Testing – If the RD wants x-rays, it’s nice to walk down the hall and have results in five minutes, instead of waiting an hour at an x-ray clinic and not getting results for a day or two.  Since x-rays only show damage after the fact, and MRIs are the best method of detecting inflammation, at some point rheumatologists will probably switch machines.  It’s a big expense, though, so I wouldn’t expect anyone nearing retirement to invest the money.  Does the doctor have an in-house laboratory, or will you need to go elsewhere for blood draws?  Since RA meds can cause osteoporosis, does the RD have a machine to do bone density scans in-house, or will you need to go elsewhere for dexa?  There’s no right or wrong answer to these questions – just things to find out and consider when you’re making your choice.

Support Staff – When you’ve had to wait while the receptionists and nurses are gossiping about how aggravating they think the last patient was (even if you agree), or the nurse’s B.O. just about knocks you over at 8 in the morning, you might decide that it’s time to factor support-staff into the equation.

Age – Sometimes age matters, sometimes it doesn’t.  You might prefer a doctor with years of experience. There are times that extensive experience is appropriate (if I need a surgeon, I don’t want to be the doctor’s first patient).  Other times you might want a younger doctor.  If you know that you will need to see a rheumatologist for the next 40-50 years, you might not want to choose a doctor who is 65 years old – unless you enjoy the vetting process and want to repeat this whole mess again soon.  You can check your state’s licensing board for a doctor’s year of birth.  Or just phone the office and ask.

Clinical Trials – Some people do not want to be a guinea pig.  But if currently approved treatments aren’t working for you, it can be nice to have access to experimental treatments.  Double-blind studies mean than some people get placebos, and going without treatment isn’t what people really want.  But that’s not the only type of study.  At the time of this writing, there is (at least) one RA medication currently given as an infusion – but my RD is part of the trial seeing if injections will work just as well.  In this trial, everyone gets treated.

Rating Sites – Three internet sites with physician ratings are vitals.com, ratemds.com, and RevolutionHealth.com.  Check if you want, but take the comments with a healthy dose of skepticism.  A doctor sees hundreds (thousands?) of patients.  Three or four comments don’t really give you an accurate picture.  Visiting a few offices to talk to patients is more time-consuming than the point-and-click method, but probably worth doing.

Is there any treatment for this?  Is there any cure for this?  I have read that some people with peripheral neuropathy take lyrica, but nobody has said that it makes things better.  I don't want another drug!  I want my old life back!  And I want the doctor who sent me for this test to call me and explain what's going on!  I assume that something can be done to treat this - why else do the test?  But even if he says that there is nothing that can be done, there is no excuse for not contacting me.

Years ago I selected an excellent family physician.  I’d take the kids for their well-child checkups, but seldom for anything else.  My husband would have his routine physical every five years, and I’d have mine every-other-year.  Sickness was rare, and we just didn’t need to see a doctor very often.  Most illnesses are self-limiting and don't require a doctor's visit.

Life is different now, and it’s hard on my family. I am very glad for all those years that we spent establishing a relationship with our doctor.  So many people tell of going from one doctor to the next, searching for years before finally getting a diagnosis.  That must be excruciating.  When I first went to my doctor about the pains I was experiencing, lab tests were done.  I had a referral to a rheumatologist within two weeks.

That was in September '07.  Between testing, physical therapy, and seeing doctors, by the end of December I’d had fourteen medical appointments – more than twice as many as the entire family usually had in an entire year -- packed into a few months.  Last year I had another fourteen appointments.  No wonder my kids look at the calendar and sigh, “Not another doctor’s appointment!”

It is only one week into February, and I’ve already had four appointments this year – with two more scheduled next month, and one in May.  I am so incredibly tired of being sent for new tests every time I mention a new symptom!  Of course it’s good that doctors are listening and making sure they don’t miss anything, but between tests and follow-up, this is getting exhausting. It's enough to make a person "forget" to mention anything new to the doctor.

Tomorrow I should hear my biopsy results.  I hope it’s negative.  I think I could deal with being told that I have a tumor, but I don’t think I’m up to seeing any more doctors for a while.  I refuse to average two appointments per month this year.  In fact, I think I’m declaring April a doctor-free zone. No new appointments!

Learning that you have RA is like a roller-coaster ride.  Physically and mentally, it’s an up-and-down process.

The first inkling I had that anything was amiss came one spring.  I had done nothing to hurt myself, but every night at bedtime, one particular spot on my left hip would hurt when I rolled over.  It felt like a bruise, but nothing was visible on the skin.  Bruises aren’t too serious and eventually heal on their own, so I ignored it.  That didn’t work, and the little sore spot got worse. It got larger and easier to feel.  It started waking me up at night.

Then LSS (little sore spot) got bigger and made itself known at other times.  It didn’t like being ignored.  I could feel it all the time, not just when I rolled over.  LSS even recruited help, calling in reinforcements from the other hip, so I took to sleeping on my back.  I also discovered that that this particular location on my hips is at the exact height as the cutting-board in my kitchen – one I apparently run into five or six times a day.  When I’d get up in the middle of the night to check on kids, I inevitably bumped into the corner of my dresser and the sore spots cried out:  one side as I left the room, and the other side when I returned.

It finally occurred to me that I should probably have it looked at, but I get up at 5:00, and am running full-tilt by the time my doctor’s office opens at 8:00.  I’d forget about it during the daytime, and only think of it again at night, after the doctor’s office was closed.  Months went by.  One day a friend watched me limp across the room and asked, “When are you going to call the doctor about that?”  It was a few more weeks, however, before I finally made the call.  By then, I could barely walk.

Sometimes it takes a few days to get in to see my PCP, but the ARNP will see people on the same day that they call.  She first thought it sounded like bursitis, but ruled that out since I hadn’t had any injury.  Her next guess was OA, so sent me for x-rays.  And, just to cover all the possibilities, had the lab runs some tests, too.  My x-rays looked great.  No OA, which I was happy to hear.  On the labwork, my ANA was positive, so a referral was written to a rheumatologist.

After waiting nearly five months to call my doctor in the first place, I now had to wait another two months to see the rheumy.  In the meantime, his office mailed me their five-page intake form so that I could complete the paperwork accurately without being rushed.  I also used the time to learn about the ANA test – labwork I had never heard of before, but that was now important.

In reading about ANA and associated diseases, I pored over lists of symptoms and diagnostic criteria for RA, SLE, and scleroderma.  I was concerned that my labwork had mentioned SCL-70 antibodies, but didn’t think the symptoms were a match.  A very good friend is an occupational therapist, and I discussed things with her.  We both decided that it did not sound like I had RA.  I thought maybe SLE, but a retired medical technologist I mentioned that to said, “only teenage girls get that, and they die before they’re 20,” so was left not having any idea what was wrong with me.

Strange as it seems now, I hadn’t realized that the odd swelling in my hands and feet was related to the pain in my hips.  I had commented once to my husband that it was weird how my hands and feet felt swollen when I got out of bed every day.  It gradually worsened, and instead of just being swollen, my feet hurt when they hit the floor in the mornings.  I would immediately fall back onto the bed to take the pressure off my feet, then gradually ease them onto the floor and hobble to the bathroom.  Since my husband has a tendency to be extremely protective of me, I made a point of sparing him knowledge of this new development by waiting to get out of bed until he got into the shower.  But one morning he forgot something and returned to the bedroom just as I yelped in pain and dove back onto the bed.  Still, neither of us made the connection that this was part of the same thing that caused my hips to hurt!

Once the morning pain and stiffness wore off I was fine.  Unless I leaned on my desk – then I’d get a sharp pain in my elbows.  I took to resting on my forearms instead of my elbows, and still didn’t make the connection.

The day finally arrived.  I’d been specifically told that children should not be brought to this initial appointment with the rheumatologist, and that I should allow two-to-four hours because they’re very thorough.  I drove half an hour to drop my kids off with friends, drank three cups of tea with them, then hopped onto the freeway and drove another hour to the doctor’s office.  As I handed the receptionist a file folder containing my prior x-rays, my copay, and my completed questionnaire,  I asked if I could use their bathroom.  At this point the receptionist is supposed to tell where to leave your urine sample.  Instead she directed me back out into the hallway, to a restroom available to the entire building, so I assumed that they did not need a sample.  Wrong, and they weren’t too happy that I couldn’t provide one (but at least they recognized the error was on their end, I had asked first).  I would be there a while, so drank a glass of water and they eventually got their sample.

It turned out that my rheumatologist doesn’t actually see all the patients in his practice.  He employs a number of Physician’s Assistants to deal with patients while he focuses on research.  My PA-C went over every question of the five-page questionnaire, and took notes for my chart.

Regarding one of my answers, he wrote “asymptomatic…”  When I questioned him (since the pain sent me to the ER on three separate occasions, I didn’t think “asymptomatic” was accurate) we got into a side discussion.  He was very dismissive and bristled at the idea that there could possibly be a treatment (outside of his specialty, yet) that he hadn’t heard of.

Aside from that, he listened to my bizarre assortment of symptoms and then did a physical exam.  Less than a minute into the exam he announced that he knew the problem with my hips and he could easily fix it.  I wasn’t sure if he was arrogant or just self-confident, to have figured it out so quickly, but was relieved to know that I might leave there feeling better.

I was taken to the x-ray room for films of hands, wrists, knees, and feet (but not of my shoulders, which were, by then, hurting as much as my hips), then back to the exam room.  Based on my answers to some of the questions, he did a tender-points test (which I’d never heard of), and after a while said, “That’s twelve, that’s enough,” and proceeded with other parts of the exam.

It was very unusual to have the PA-C leave the room to write up his findings, then come back and double-check the answers to a few questions or do another test, then leave again and repeat the process.

One test immediately made my right hand start tingling, and he said I had carpal tunnel (which I already suspected, but his report back to my PCP said the tests for that were inconclusive).

After three-and-a-half hours, I was exhausted.  The doctor came in and the PA-C presented his findings, the two of them read my x-rays, and the doctor asked me a few questions.

The PA-C and doctor had an argument a discussion as to whether I really had RA.  The PA-C thought yes, the doctor didn’t sound convinced but nonetheless told me that my diagnosis was rheumatoid arthritis and fibromyalgia.  “There’s no joint damage on the x-rays, and we can prevent you from ever having joint damage,” was good to hear.  He also said that I had bursitis in my hips and a cortisone injection would have me feeling better within an hour.  With his hand on the doorknob to leave, he asked if I had any questions.  I was stunned to hear that I had one disease I thought for sure I didn’t have, and another that I’d never heard of.  In time I’d have questions, but not right then.

After the cortisone shot (only one hip, because insurance will only cover one shot at a time), the PA-C gave me a prescription for pain medication, wrote orders for the lab, wrote a referral for physical therapy for my hips, showed me where to get my blood drawn, and said he’d see me in a month.  I left the exam room with mixed emotions and my head spinning.

The doctor saw me waiting for the lab tech and came over to ask if my hip was feeling better yet (he expects cortisone to work very quickly).  He seemed to care, and I liked him in the brief time that I saw him, but it was very brief, and I sure could have used a little more information.  I wasn’t sure that I liked the PA-C, despite his thoroughness.

So began my education about rheumatoid arthritis and fibromyalgia.  I spent the month going to PT and reading about my diagnoses.  The pain in my one hip – the whole reason I went to the doctor – was now gone, but that pain had been caused by a mysterious disease that would never go away and I was looking at a lifetime of medication.

The more I learned about rheumatoid arthritis, the more confused I got.  This disease should be treated with NSAIDs and DMARDs or a BRM.  Instead I received a pain killer – to which I had a violent reaction.

When I phoned the doctor’s office about my reaction to the medicine, my call was not returned.  When I phoned again the next day, that call was not returned, either.  When I phoned a third time and said, “I’m not taking this prescription I was told to take,” the PA-C still would not take the call, and told the nurse to have me take a different pain medicine – one to which I’d already told him I was allergic!  I had a lot to learn still, but I did know that pain medicine was not an essential part of the treatment for RA, so I threw the pills in the trash and focused on my PT exercises.

The more I learned, the more I was convinced that they’d been wrong about the fibro.  I was tired because I’d had four babies in five years, and three years later had one more.  Five kids in eight years would make anyone fatigued!  I did not get a good night’s sleep because 1) children calling, “Mommy!” in the middle of the night wakes me up, and 2) every time I rolled to either side, the pain in my hips awakened me.  Nobody feels well-rested when they’re awake more than they’re asleep.  As to the tender points test, I wanted to scream, “quit poking me and it won’t hurt!”  I learned that lack of sleep can cause a number of problems, including muscle pain.  Everything I read led me to believe that fixing the pain in my hips would alleviate most of the fibro symptoms, and teaching my night-waking child to go back to sleep without my assistance would help with the rest.  That has proven to be true.

At my follow-up appointment, the PA-C entered the room and announced, “It looks like you’re medication sensitive.”  Already I wasn’t sure if I liked the guy, and now he was blaming me for his prescribing error!  Not a good way to start the appointment.

He went over my lab results from the previous appointment – I’d received a copy in the mail, so already knew that my ESR, CRP, and RF were well within normal limits, and even knew what that meant.  I was told to take glucosamine, get shoes with better support, and phone if I wanted a referral for PT on my shoulders.  Why I couldn’t have a referral right then, I don’t know.  I was also given a prescription for a topical NSAID gel, sent for more lab work, told to come back in three months, and rushed out the door.  I drove this far for that?!  I left very frustrated that I had been told that I have RA, but was not being treated for RA.

A few days later the PA-C phoned.  He claimed that he was surprised by my lab results.  Although my RF was negative, my CCP was strongly positive, so he wanted me to start on a DMARD right away.  My follow-up appointment was rescheduled for a closer date.

Five weeks later I went back for the follow-up.  My feet and hands already felt better because I’d responded very quickly to the DMARD.  An added bonus that I wasn’t expecting:  I had more energy than I’d had in years.  Since I was doing so well, the PA-C said, it helped to confirm the RA diagnosis.  He added a prescription NSAID, insisted on a CCB to treat my Raynauds, and said he’d add a second DMARD next time.  He was very impatient with my questions.

The PA-C also told me that a strong positive on the CCP was what he’d expected to find.  ????  On the phone he said he’d been surprised at the results.  No matter how good the rheumatologist is, it is not a good fit between me and this particular PA-C.  We’d had a disagreement at my first appointment.  Then he didn’t return my phone calls.  Then he blamed me for his mistake with the pain killer. Now he couldn’t get his story straight on what he thought the lab results would be.  I couldn’t talk to this guy and I didn’t trust him.

I phoned my PCP’s office and asked if I could make an appointment just to ask questions.  That was one of the most beneficial doctor’s appointments I have ever had, and I left feeling that even if insurance didn’t cover it and I had to pay the whole cost myself, it would be some of the best money I’d ever spent.

My first question was, “Do you think I need to see a rheumatologist, or can you treat this?”  He looked at my medications, reviewed the report from the RD, and listened to me.  First, he explained that it sounded like the problem with the pain medication was an overdose, rather than an allergic reaction.  If I could bring myself to take half of a tablet, instead of two, I should be okay.  But he’d understand if I didn’t want to do that and didn’t push.  Later I searched for overdose data on that medication, and realized that my doctor was right; it definitely sounded like an overdose (even though I took the exact amount prescribed!).  Then we discussed RA, and he said that the medication I was taking was pretty mild, and he could do the follow-up as long as my symptoms were controlled by the mild medications.  My hopes went up.  He continued by saying that most people with RA end up on methotrexate or even stronger drugs, and he prefers not to prescribe those. My hopes were dashed – the PA-C had said he’d need to add another DMARD.  Although I didn’t like the guy, I wasn’t going to let that jeopardize my chances of still being able to walk in ten years, so I’d see him if I had to.

If there was an award for Best Doctor on the Planet, my PCP would be in the running for it.  He listened to me, explained things to me, and was honest about what he was comfortable treating.  Even though I’d prioritized my questions to ask the most important first, knowing that I’d run out of time before I ran out of questions, my doctor took extra time to answer every question, assured me that there was plenty of time, and never made me feel like I was imposing on him.

Back I went for my follow-up with the rheumatologist's PA-C.  He examined my joints, mentioned that maybe I have "rhupus," a condition with overlapping symptoms of RA and SLE, said he didn’t think I needed another DMARD, and told me to wear sunscreen on my upcoming Hawaiian vacation.  Given the length of my previous two follow-up appointments, I thought we were done and was ready to leave, but he sat and told me about his personal life for half an hour.  I still didn’t like him, didn’t care about his personal life, and if he wasn’t going to add that second DMARD, I didn’t want to see him any more!  I scheduled a follow-up, but had every intention of cancelling it after seeing my PCP.

When I couldn’t stand the pain in my shoulders any more, I called my PCP.  Part of me couldn’t believe that I’d gone from being someone who only saw the doctor every couple years for a routine physical, to someone who saw a doctor nearly every month.  Another part of me was in too much pain to care.  I was glad to have a long, established relationship with this doctor.  He knew that I wouldn’t call frivolously.

We talked and he gave me a cortisone shot in both shoulders, saying that he could do it every three months.  It wasn’t very encouraging to hear that I could expect to have ongoing problems with my shoulders, but at least my doctor was willing to treat the pain.

A month later I went back, and my PCP agreed to do my RA follow-up as long as my symptoms remained under control on the milder medications.  It was amazing how much better I felt, just knowing that I didn’t have to see the PA again.

The cortisone didn’t last long, so I did everything I could to avoid reaching up.  I rearranged the clothes closet, giving my husband all the upper rods and taking the lower ones for myself.  I rearranged the kitchen cupboards so that the things I use most frequently are below eye-level and could be reached without pain.  We bought a lighter-weight vacuum cleaner.  My kids took over some of the housework, and I hired a college student to come clean once a week.  I did what I could, but my shoulders still hurt.

At my next follow-up, my PCP gave me another cortisone shot in both shoulders and a referral for PT.  It seemed I was having more trouble with bursitis and tendonitis than with my hands and feet.  My doctor again took time to listen to me and answer my questions, and explained that all the inflammation was from the RA.  I left there feeling like he’s not paid nearly enough for all the help he’s given me.

By the time that my next follow-up came, the PT had helped, and I only needed a cortisone shot in one shoulder.  My hands and feet were significantly worse, though, and I was afraid that I’d be told that it was time to return to the RD.  Instead my doctor increased my plaquenil to three times a day and added a preventive medication for the headaches I’d been having.

Follow-up with my favorite doctor was only a month a way, but I knew that if we’d needed to increase my plaquenil, I was on my way back to the RD, so I called to make the dreaded appointment.  It had been less than a year since I was there last, so I didn't have to have a new referral.  It was no problem getting an appointment, but even as an established patient, I couldn't be seen for two months.

Between the cortisone shots and PT exercises, my shoulders are feeling okay.  My hands, which were almost useless a month ago, work well most of the time.  Those things are good.  Unfortunately, my feet are much worse, and I’m tired all the time again, so I wasn’t surprised when my PCP asked which RD I’d seen and said it’s time to go back.  I’m very appreciative of the care he’s given me, patiently answering my multitude of questions and giving me time to adjust to this life-changing diagnosis on my own terms.  He’s not getting rid of me; in fact I see him again in a few weeks for tests on other symptoms I’m having.  He’s still going to see me for routine care, but rheumatology is not his specialty.

My PCP is a good doctor and wants me to see the most appropriate person for treatment of this horrid disease, so I will go back to the rheumatologist, even if it means seeing a PA-C that I dislike.  I know more about RA, and know what types of treatments are available.  I am encouraged because now I know that I have choices, and I have hopes of beating this disease.