How is Rheumatoid Arthritis Diagnosed? Part 2
Will I need an RA Patient Protection Plan?
Diagnosing Rheumatoid Arthritis is not easy. Living with RA is no picnic either. And writing about it is like untangling cooked spaghetti.
There is no single definitive RA test
There’s is no conclusive test for a clear positive or negative diagnosis for Rheumatoid Arthritis. But, I believe that the diagnostic process could be improved. And perhaps our collective effort will bring us closer to that goal.
First, is there anything that could make diagnosing Rheumatoid Arthritis any faster or less tricky? Is there anything that the American College of Rheumatology (ACR) could do to improve RA diagnosis procedures? Second, what can we patients do?
Let’s talk about the guidelines (see Part 1). Many patients approach a rheumatologist with symptoms which do not initially satisfy the clinical requirements for diagnosis. Then, within a few months, these same patients are diagnosed with Rheumatoid Arthritis. Do we say that the patients should have had more obvious RA symptoms sooner or that the guidelines should be adjusted?
Look at one scenario: a patient presents with symmetrically inflamed knees, shoulders, and feet. She could easily fall outside of the guidelines because her hands are not yet affected. Hands and wrists are key to diagnosis by today’s guidelines. Many doctors do recognize the feet as equal to the hands in importance, but when they do so, they are stepping outside of the guidelines.
A patient can easily have three out of the seven symptoms on the list recognized by a doctor and fail to receive an RA diagnosis (yet) because symptoms develop in a different order in different patients. It has only been in recent years that the ACR has recognized that early diagnosis and treatment is important to alter the disease course. The guidelines were not developed by studying the onset (early stages) of Rheumatoid Arthritis.
Many of the visible symptoms of RA vary by individual and throughout the course of the disease. Many who “start out” seronegative (with a negative Rf test) are later seropositive. External swelling can be either extremely noticeable or very slight. There are even cases in which the arthritis is not symmetrical.
Some of the symptoms included in the guidelines are totally subjective, such as stiffness. Here, the key to getting the symptom documented toward a diagnosis is good communication. I don’t need to tell you about how well some doctors listen. Even if you have found a good one, you’ve heard the dreadful stories.
Fatigue is another highly subjective symptom. It is considered by many authors of books on RA (physicians mostly) to be a hallmark symptom of Rheumatoid Arthritis. However, fatigue is not even on the list of seven guidelines.
I realize that I am raising difficult questions (please see Part 1, paragraph 5). And the answers may not be easy or obvious. Many doctors are already reaching beyond the guidelines now by considering things such as an anti-CCP result, fatigue, muscle weakness, or Sjogren’s syndrome in diagnosis. These indicators are in the books; and they are part of most RA patients’ lives. The fact that many doctors go beyond the guidelines to look at extracurricular symptoms is proof to me that the guidelines need to be updated.
As I said in Part one, the “listening” problem has been solved with the internet. Doctors do not even need to listen well to patients to improve their understanding of us. The ACR can hire researchers to analyze and compare narratives of many thousands of RA patients who have used the internet to document their onset and diagnosis of Rheumatoid Arthritis. Perhaps, patterns would emerge which could enable doctors to more easily recognize the onset of RA.
What can patients do? If we are unsure of a diagnosis, we should ask for more tests. In extreme circumstances, it is even possible to extract fluid from a joint to examine it for substances typically present in Rheumatoid Arthritis. We can ask that doctors listen carefully and document our symptoms as we report them. We can suggest doctors read some of the volumes of documentation available about RA on the internet, written from the patient’s viewpoint.
When the onset of so many is considered atypical, it is my opinion that a mold which does not fit is the thing that is wrong and not patients’ presentations. Why not use every test available to procure a diagnosis of such a complicated and poorly understood disease which has such devastating consequences? Why risk delaying treatment?
I had not planned to write about this for at least another year. I wonder if I can plead temporary insanity for having questioned authority so resolutely. Does anyone ever win fighting City Hall? I hope I will not need a witness protection – no, a patient protection plan for troublemakers.
Of course my opinion is my own. That is part of what a blog is. Some days it’s like trying to untangle cooked spaghetti. Messy.
Recommended reading:
- How is Rheumatoid Arthritis Diagnosed? Part 1
- American College of Rheumatology Redefines Rheumatoid Arthritis
- Hysterical Diagnosis, Part 2
I think it is correct to say that some doctors just don't put the pieces of the puzzle together because they don't know what the whole picture looks like. It is unfortunate that so many doctors I have seen have had no answers to what was causing my pain but were satisfied to just send me on my way with "nothing". That is just wrong!! Are some practices becoming too large for good patient care? Is medicine about helping PEOPLE or about doctors MAKING MONEY?
I believe the key to my diagnosis was persistence in knowing my own body and how I KNEW I felt….I didn't give up until I got an answer. I found a doctor who listened to me as if I was the most important patient he had and didn't let me go until there were answers. Although, not necessarily the answer that I wanted to hear (after at least a decade of searching), it is an answer and now I can focus on treatment and prevention of damage. For that I am thankful.
Well said, Jenny.
I wish your dr would start a special school to train doctors to be such good listeners!
Your blog lends evidence to the fact that we still don't know that much about RA. And that leads to confusion in diagnosing and treating it.
Yes, Andrew I agree.
But, it I think it is easier than ever to learn now thanks to the 'net.
We can learn from each other at the speed of cyberspace. But, how can we get the "medical establishment" to hear what we are saying about whatever we understand of RA is?
I love your idea about mining patient data from online posts about onset and symptoms. There are bias issues but it would certainly be a rich data set. There are similar data mining strategies done in business, industry, and education. Hmm…now you got me thinking…
My doctor never mentioned the seven criteria. But looking back, I now know that's what he was looking for with all the forms, tests, xrays, and interviews. I met all but nodules and positive RF test. But I also had other symptoms that both he and my general doc used to lead towards a diagnosis. Those were iritis of both eyes, extreme fatigue, and chronic hives. Neither are on the ACR list. Fortunately, once it was clear it was RA, he acted quickly.
Andrew,
I am glad your dr did as you said. You were lucky AND blessed.
Now, professor, keep plotting and help me figure out how to "mine the data" and help others! Yeah!
So true on your email. I had three doctors tell me I have Seronegative RA, OA, and fibromyalgia. The first doctor changed taking my insurance so I went to another one. He qualified me and continued the medicine treatment before he strted not taking questions or listening anymore.
My third RA has been a gem up until now. She had put me on biologics and kept me on Methtrexate for almost a year now.
Just recently she started getting a little grumpy and at one point said to me with my wife present, I don’t think you have RA since the labs are always negative. However it started with both hands, feet, then knees. Fatigue and chronic severe pain has been with me since. I have 7 symptoms of the required 4 for RA. I guess RA doctors get tired of hearing us complain it hurts so much could you please fix it. Thats when there attitude changes. I heard this from others. OH well, I have it in writing I have the big three and if you look at my deformed swollen hands and feet, that should give them a clue. I hope they understand it does not have to be Seroposative to be RA.
I’m not sure whether you read this other post yet, Steve. Last year they published new “guidelines” for RA diagnosis. Here’s a link to that post. I agree that you already have your diagnosis, but I’ve heard stories like yours more than once just like you said. Some visible symptoms improve with medicine & the invisible ones don’t and some doctors seem to lose patience with patients saying, “I’m not better.” It’s a progressive disease; most of us don’t feel “better.” And I completely agree that “seronegative” only means we need better tests. I was called seroneg by one doc even though my Rf had been high before and the anti-ccp remains off-the-chart high. The Enbrel had temporarily suppressed Rf, while not affecting symptoms. Many patients have told me that their Rf goes up & down while damage continues.
did you ever hear of anyone with RA having severe neck tightness and dizziness (and headaches)?
The part of my diagnosis that has been a puzzle for me is the fact that my rheumy did not even check my SED, CRP or Anti-CCP. The only blood work she was concerned about was the Rheumatoid Factor and that was negative. She ran some other blood tests but none of the RA tests. She went purely by observable physical symptoms, medical history and the length of time these things had been going on. I have not read of another patient being diagnosed without the above mentioned blood work being checked and this has led me to doubt my diagnosis at times. Then I began to question myself as to why the blood work would have mattered either way, negative or positive, and I realized that whatever the results would have been would not have mattered in the face of documented episodes of recurring inflammation and swelling, pain, Iritis and fatigue. So I think I had become a little programmed into thinking these tests are the end all and be all of RA diagnosis because everything that I read told me so.
This just amazes me because so many people get “stuck” in limbo because of these tests and I didn’t even have to have them done and I’m not that bad off physically or pain wise compared to others with RA. The inconsistency of RA diagnosis is horrible!
January of this year I injured my back as the months went on I started having swelling of my joints. I saw my family doctor she ran some blood work and as I waited on the results I was getting worse. My fingers are swollen, knee caps and sever pain shooting through the knees to my ankles into my toes. My blood work came back auto immune ra, I was referred to Washington State to see a ra doctor. My appointment lasted about 15min and she said I looked fine and go home. When I asked her why my fingers didn’t look normal and my knees and ankle are visible purple and swollen. Her reply was you much be cold, WOW I am speechless and feeling hopeless. I need some advice because at this point I don’t want to see another doctor, but my figures are getting worse and my knees are extremely painful.
Hi i was told in 1982 that i coulndnt have no more kids and in 1990 i was was hit with osteperoises arthirits now im 52. And i have to get ahip replacement on right hip but now on my left ankle on the back bone i have like a golf ball and now it hurts is it arthritis
This was a good read. I’ve had so many symptoms and I was sent to a neurologist, who I know wasn’t listening to a word I said. I was beyond frustrated. Month and months of pain and fatigue to the point of tears. I became depressed and I have withdrawn from the public and my life. A few weeks back I happened to be talking to my aunt who I don’t see often , told her how I was feeling. She asked me to see my cousin Micheal who is a doctor. He is a bit far. But I thought he was a GP. But no he is an RA doctor. I went. His partner saw me first, my cousin was on vacation. My tears flowed and the pain by that day was more than I can handle . She examined me and took blood and gave me prednisone. A week later I had some relief. I went back on the second week and saw my cousin. My blood work came back negative , but every other sign is RA including a family history on both my maternal and paternal side. How frustrating. No diagnosis with out a positive test? He kept me on prednisone for next two weeks to be slowly reduced over two weeks. I’m petrified when these meds are done. I feel pretty good right now. Not 100 percent but 60 percent better than I was and that’s huge. So is the blood test the factor in a diagnosis?? I go for X-ray tomorrow of hands feet and lungs. I know my cousin knows that this is RA. But he can not diagnosis without a blood confirmation. It’s crazy. People will start to think they are going crazy. This much pain and no way to prove it. Or diagnosis when there is no positive blood work yet.