What to expect at my first rheumatologist appointment?? - Immune Disorders Message Board

lynn41 · 04-09-2008, 06:05 PM

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.

dandelion3 · 04-09-2008, 08:51 PM

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.

Tammy

lynn41 · 04-10-2008, 05:53 PM

Dandelion3:

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.