Tuesday, July 21, 2009

What Makes Diagnosing Rheumatoid Arthritis So Difficult?

Why is it so hard to get a Rheumatoid Arthritis diagnosis? RA-ers ask me that all the time. Why don’t we watch the mini-movie and then we’ll talk?

Video on referrals for Rheumatoid Arthritis:

There are some familiar themes there:


Rheumatoid Arthritis patients report that healthcare professionals often underrate their symptoms. Sometimes, it is as if doctors are hard of hearing. But, other times it can be worse: they can intentionally discount the patient’s descriptions of the disease. Did you hear the lady say that her doc thought her just a “neurotic teenager”? I know one RA-er who was sent to a psychiatrist instead of a rheumatologist. I have actually seen doctors scoff about RA.


Astonishing as it is, even many physicians are unable to recognize Rheumatoid Arthritis when confronted with the symptoms. They may not know that many RA-ers are seronegative, like another woman in the video. They frequently have misconceptions of Rheumatoid Arthritis. Otherwise, they may rely too heavily upon the ACR’s 7 guidelines.


Concerning Rheumatoid Arthritis, misdiagnosis is consistently “under-diagnosis.” Doctors tend to look with skepticism upon portrayals of RA which sound dramatic or extreme. (Who could believe someone could live with this much RA?) This tendency can cause doctors to “miss” Rheumatoid Arthritis entirely, seeing instead less serious conditions.


Some patients in the video stated that they were made to feel that they or their illness was unimportant. While that infuriates me, I actually have more grave reasons to protest. This is about more than hurt feelings. Here are some other consequences:

1) When doctors do not accurately hear what Rheumatoid Arthritis patients recount, it results in delay of an accurate diagnosis of RA. Of course this means either lack of treatment or an inappropriate treatment. Remember the dear mum in the video who was forced into an exercise program to treat her RA? If she had had another condition, instead of RA, she might have improved. However, it made her worse BECAUSE SHE HAD FULL-BLOWN RHEUMATOID ARTHRITIS.

2) If symptoms are not accurately heard, they cannot be accurately recorded. This may hurt the patient’s position with future providers, with long term disease management, and with insurance issues regarding treatment options.

3) Rheumatoid Arthritis is believed to cause permanent damage even during the first months of being symptomatic. Patients are permanently harmed when doctors refuse to hear them and do not refer to specialists or begin treatment.

4) Finally, I believe that one reason scientists can’t find a cure to Rheumatoid Arthritis is that the disease process is not entirely understood. It is impossible to cure what we do not understand. Failing to listen only exacerbates this problem.

Bewildering, huh?

Dangerous thought: what if doctors were hired based on whether they could find the right diagnosis… like plumbers and electricians? Would that help?

Recommended reading: Diagnosing Rheumatoid Arthritis
RA Warrior’s RA
It’s Okay to Laugh if You Have Rheumatoid Arthritis


andrew said...

These stories seem all too common. I want to back up even further and speak to the lack of knowledge by the general population (one of your purposes for your blog). I suspect that many people start suffering symptoms, especially if they come on over a period of time and don't see a doctor. While some people know about joint disfigurement, especially in the hands, most people don't know about other RA symptoms like fatigue, eye problems, tendon tears, etc. I thank God that once my symptoms starting coming all together, I was able to read about it and make an appointment with my internist. He quickly put the pieces together, order blood tests, and sent me to a rheumatologist who commented that the internist was a smart man.

Shanna said...

This makes me so thankful for my family practice doctor. I went three weeks from my first appointment with him to my first appointment with my rheumatologist and subsequently starting my treatment plan. The onset of my symptoms to starting my meds was three months. I understand now how incredibly lucky I am!

Kelly said...

There are several good comments to this post which have been posted on the Facebook page for the blog. You might want to stop by there, too if you are interested seeing in more comments on this blog.