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What to expect from first rheumatologist appointment??

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Old 04-09-2008, 01:45 PM   #1
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What to expect from first rheumatologist appointment??

I finally have an appointment with a rheumatologist after 17 months of going back and forth with my GP. Can someone please tell me what to expect at my first appointment? I've never been to a "specialist" before and don't know what to expect. I am very anxious since my GP seemed to think it's probably a waste of time.

Here's the short version of my worst symptoms from my last 17 month medical history: joint pain (severe at times); rash on upper torso; worsening TMJ; fatigue.

My recent lab test was positive ANA with speckled pattern but low titer.

Thanks for any response.

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Old 04-09-2008, 05:24 PM   #2
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Re: What to expect from first rheumatologist appointment??

((((((((hugs))))))))) First appts. can be so daunting I think every Dr. is different, but my first rheumy appt. went like this:
In the waiting room I was asked to fill out a survey about how I was feeling, what kind of things I could or could not do, for ex. Did you experience stiffness or soreness this morning when you got out of bed? Have you had any difficulty running errands? etc.. (still have to do this for every appt.) Then her assistant called me back, took my weight, measured my height, took my blood pressure, what meds I was on, my symptoms, took a full medical history and had me change into a gown. The Dr. came in next and examined my rash, took my temp., felt of my lymphnodes and thyroid, listened to my heart and breathing, checked all of my joints, noticed my abdomen was distended and felt around on it, looked at my mouth, throat, eyes and ears. Asked me about several things from my list of symptoms, for more detailed descriptions of what I was experiencing. Then she went into family history a bit. She ordered several blood tests, a complete ua and some x-rays. She told me at the end of the appt. that she was pretty sure I had SLE, but the tests were for several things as well as sle, (ex. latent strep, lyme, weggners, mono, RA, aps, sojrens etc), just to be sure. She handed me a pamphlet about SLE, explained that while it wasn't yet curable, research was ongoing and there was hope. She started me immediately on a fairly high dose of prednisone and on plaquenil. That is about all I remember. It wasn't scary, she was really nice. About a week and a half later, she called to tell me the results, which overwhelmingly pointed to SLE, and her office scheduled needed appts. with other specialists.

I think you need to look for a Dr. who examines you thoroughly and listens to you. Write down your symptoms before the appt., so you don't forget anything. Here's hoping you get a great Dr.

Old 04-09-2008, 05:47 PM   #3
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Re: What to expect from first rheumatologist appointment??


Thank you for the reply! I really had no idea what to expect. I've been keeping notes of what's been going on for a while now, and I have pictures of one of the rash outbreaks that I will take with me.

I've read many different stories about people who have gone through bad appointments with doctors who are dismissive, insensitive, etc., and I think that's part of the reason why I feel so anxious. It's taken so long for me to get this appointment that if he just dismisses me, he will probably have a hysterical, blubbering mess on his hands.

Thanks again!

Old 04-09-2008, 07:51 PM   #4
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Re: What to expect at my first rheumatologist appointment??

My husband went to his first rheumatologist who literally raised one of my husbands arms, sat down in his chair and said, "Sleep Apnea". He then proceeded to spend the next 30-40 minutes telling us my husband needed to have a sleep study, etc. When we left, we were very confused. We returned to our GP who did not feel comfortable with this diagnosis as my husband's lab work had a positive ANA and Anti Jo-1 antibodies. There were many symptoms my husband was experiencing which pointed to an autoimmune disease. We were referred to another rheumatologist whom we love.

Here's how your appointment should go: You should be told to change from your clothes into a gown; the doctor should examine you from head to toe; he/she should check your eyes, nose, heart, lungs, etc.; he/she should look at your fingernails, feel your joints, etc.; he/she should ask you to do different tests by having you grasp your hands together, putting them behind your back, etc.; he/she should check the range of motion of your joints. All this should be done while he/she is asking questions - gaining information from you.

I cannot remember what else my husband's rheumy did, but our appointment was over one hour long. Almost the entire time was spent with the doctor (with the exception of time changing clothes).

At the end of the physical assessment, the rheumatologist sat down and discussed possibilities and concerns. He then ordered lab work and x-rays. The testing was extensive, but helped in ruling out diseases.

Before we left, another appointment was made to discuss the results of the lab work.

The difference between the first and second rheumatologist my husband visited was unbelievable. Through the additional testing and the diligence of his second (current) doctor, my husband has been diagnosed with Wegener's Granulomatosis. If he had stayed with the first doctor's diagnosis, my husband most likely have died within five months.

Sorry this is lengthy. Hope it helps you. Please keep us posted and remember to go with your gut feeling.


Old 04-10-2008, 07:08 AM   #5
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Re: What to expect from first rheumatologist appointment??

Lynn, Good rheumies take a LIFETIME medical history. There are certain things common in the early years of people who later go on to develop lupus. (See the "sticky post" with "alternative criteria" in its title, at the top of the thread list.)

Good rheumies won't diagnose anything until symptoms & test results "make the case". This can be frustrating, because we want answers, but it's the medically sound approach. Sometimes they'll re-do bloodwork, etc., even things you've just had done, in order to use labs of their choice, or perhaps to look for a second "positive" on something that's been positive once already---or to add tests that have never been run.

Specialists should also explain how & when you'll get results, from them or via the referring dr. (if any). Whether you'll need another appt., with them or perhaps with some other specialist of their choice (maybe a dermie is a possibility for you). Whom to call if something new crops up. Etc.

Don't be nervous---look at this appt. as turning a corner. I always went in with high hopes, figuring if it was a bust, I could always fret LATER.

When do you go? Wishing you good luck! Bye, Vee

Old 04-10-2008, 04:27 PM   #6
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Re: What to expect from first rheumatologist appointment??


My appointment is tomorrow morning. I'm really trying to make sure I go in with the right attitude knowing that nothing about this has been quick until now, and nothing will be quick after the rheumatologist appointment. Thanks for the good luck wishes!

Old 04-10-2008, 04:53 PM   #7
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Re: What to expect at my first rheumatologist appointment??


Thank you for the response!! It really sounds like it depends on what kind of doctor I get. I hope I get one that will listen to what I have to say. I have read several articles about rheumatologists and other doctors who don't listen and are very quick to dismiss. I am extremely nervous about the appointment. It's been a long 17 months with these symptoms and now that I finally have the appointment, I'm scared it won't go well. That's very good advice about the gut feeling too.

I hope your husband is doing well and getting the care he needs.

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