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 test which has a clear positive or negative result 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 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 protectionr – 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.
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