Welcome to the second ever rheumatology carnival, a blog carnival on diseases of rheumatology such as Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjögren’s syndrome, and Juvenile Arthritis. You are in for such a treat. I hope you’ll take time to read each of the blogs that was submitted.
What would improve diagnosis of RA or other autoimmune arthritis?
This was a really tough topic. So kudos to the participants of this 2nd Rheumatology Blog Carnival! Last week, I asked folks to come up with suggestions of ways to improve diagnosis of autoimmune arthritis diseases. We realize that none of us has the single answer. However, when we add the knowledge we’ve gained to our combined experiences and passion, we may shed new light on this important topic.
Rheumatology Diagnosis Carnival
Julie of An Attitude of Gratitude wrote Thoughts for Improving the Time it Takes to Diagnose Rheumatoid Arthritis. Julie appeals to medical professionals to
- Listen to patients with suggestions of how it can be accomplished in a busy practice.
- Use the anti-CCP over the Rheumatoid factor.
- Realize most patients aren’t drug seeking, but often suffer silently.
- Educate themselves if they are in general practice.
That’s not all: Julie has a similar list for patients. It’s no nonsense advice for every patient to take charge of his health.
Tanya of RA New Life wrote Improving Early Diagnosis in Autoimmune Arthritis. Tanya is a nurse who says, “I woke up one morning disabled.” Like many patients, she looks back to put together the pieces that could have been clues for an earlier diagnosis. Even though she sought medical attention for symptoms that she now recognizes as Rheumatoid Arthritis, she was not diagnosed because her Rheumatoid factor was not elevated. Tanya is so matter of fact – I can just see her doing the things she says she did to avoid being thought of as weak. I wish every doctor could read this short true depiction of someone being diagnosed with RA.
Lauren of Unguided Missile wrote Autoimmune Ignorance, Part 5. The “part 5” should clue you in: Lauren means business. Considering both her own experience of being diagnosed with Psoriatic Arthritis and that of her husband, who has Ankylosing Spondylitis, she explains that education is the most important thing needed to improve autoimmune arthritis diagnosis. Doctors dismissed their symptoms because of inadequate knowledge of the diagnoses they now have. Autoimmune arthritis seems like it’s the least recognized of the autoimmune diseases.
Barbara of This Luscious RA wrote Missing My Body’s Signals. Looking back for clues before diagnosis, Barbara recalls subtle signs of low level inflammation and a constant low level fatigue that she excused for other reasons. What sign led Barbara to realize those early signs were likely Rheumatoid Arthritis? During these last couple of months, those symptoms have resolved with treatment. The contrast of feeling well crystallized her thinking. She appeals to patients not to accept feeling unhealthy without a logical explanation. Her “new crusade” is to help people to realize when they need help.
Carol of My Life as a Traveling Southern Girl wrote RA Diagnosis: Round Pegs in Square Holes. Carol is a southern girl with a sense of humor a love for snow! She also works in the healthcare field and has a logical take on diagnosis. She has practical advice for patients who present as round pegs that don’t fit notions of diagnosis (square holes):
- Document your symptoms.
- Keep asking your doctor.
- Be a pushy patient.
- Get a second opinion.
Jodi of Aim for Perfection Editing wrote Edited by RA. Jodi is a professional writer and editor who has an inviting way with words. She plainly states what patients need from doctors in order to make the diagnosis process easier. “I think doctors need to educate themselves—not by reading textbooks but by listening to their patients—and stop looking at numbers and statistics to define debility.” You’ll also love Jodi’s new doctor. This is a “wonderful rheumatologist who listens to my concerns, who cares about reducing the limitations RA imposes on my life…” That is all patients can ask for.
Jen of The RA Vegan wrote Talking about RA: Reducing the Time to Diagnosis. Jen makes the case for patients with normal blood tests like her. When her symptoms said RA, but her blood tests didn’t, a good doctor admitted “I don’t know,” and sent her to a specialist. Often that is the key job of primary care doctors so she makes an excellent point. Jen is also glad for doctors who accept her choice to eat vegan and has hope that we are “…moving towards a time when we can try to help people feel better and get better by looking at the whole person.”
Do you see any common diagnosis themes?
Some themes stood out to me such as better education about the diseases themselves, finding doctors who listen to their patients, and persistence on the part of patients. Personally, it seems a lot of patients who thought of themselves as “atypical” during diagnosis seem pretty typical to me when the common threads in their diagnosis stories are examined. Perhaps typical should be re-defined.
I want to thank the contributors for participating in this tough topic. Please email me if you’d like to be added to the list to be notified next time we plan a carnival.
Note: Mayo Clinic has been involved in a huge research project that’s leading to new findings. Recently they published a chart summarizing the percent of people likely to be diagnosed with several types of autoimmune arthritis during a lifetime.
- The page on RA Warrior for folks looking for diagnosis: Do I Have Rheumatoid Arthritis?
- Enjoy the 1st carnival too! It’s good stuff! Rheumatology Blog Carnival #1: Causes of Rheum Un-Awareness
- A few suggestions I had for docs on how to improve diagnosis: How Can Autoimmune Arthritis Diagnosis Be Improved?