Rheumatoid Arthritis Diagnosis Dilemma
My heart breaks as I read emails and messages people send me about Rheumatoid Arthritis. Diagnosis is a common theme: “Do I have RA?” “Does my husband have RA?” “How can I know for sure about an RA diagnosis?”
How long did it take you to find a Rheumatoid Arthritis diagnosis? Did you go online to read during that time of searching and waiting? There’s a debate going on about how many people search online for medical answers, where they turn first, and who they trust most.
Like it or not, people are searching and asking because they need answers. I know I did. Have a look at this interesting article I read yesterday on E-patients.net. Apparently, according to the report discussed, half the people surveyed said they wanted to seek a doctor’s advice first, but only ten percent actually asked the doctor for an answer first.
Rheumatoid Arthritis Diagnosis page
Today, I’ve posted a new page on RA Warrior to help those come here searching about a Rheumatoid Arthritis diagnosis. Look on the main menu under “Do I have RA?” This page answers some basic questions like “What does an RA diagnosis look like?”; “What else could it be?” and “What tests should I run?”
Of course, this blog is written from a patient’s point of view. It’s not for everyone, but that is what some people are looking for. The RA Warrior disclaimer page is here.
Recommended reading:
- Do I Have RA?
- Rheumatoid Arthritis Message Boards
- E-patient’s role in Healthcare Social Media: Do Doctors Hate Blogs?
- Dear Bridget Duffy from a Rheumatoid Arthritis Patient
Wow! Does this ever hit home! I’m sitting here waiting for my first visit to a rheumatologist at the end of the month. I have had two GP’s examine me over the course of the last year, both of whom initially suspected RA. However, they also both backtracked on the diagnosis after reviewing my lab results. The first doctor didn’t even bother to suggest an alternate diagnosis while the second offered that it must be OA instead. Neither suggested followup with a rheumatologist . . . that was my idea after having done a bit of self-education. Yep . . . on the internet!
I just want to say thank you so very much for this blog, Kelly. It has answered loads of questions for me, albeit not necessarily with the answers that I wanted to hear, but answers, none the less 🙂 Your efforts have made a great deal of difference for me, and I’m quite sure for many others as well. So, please keep up the good work!
Lisa
Thank you, Lisa.
Did you see the blood test posts ( I think the link is in the Do I have RA page-)? I’m amazed how most GP’s are really confused about blood tests for RA. I often get letters like your comment. We really need to get the docs educated…
Let me know how it goes with the rheumatologist. I hope you can get to the bottom of this soon.
Thanks again for taking time to comment. Posts like yours keep me going when it gets really hard.
Yes, the blood test posts are what confirmed for me that I had made the appropriate decision to seek a more specialized opinion. I was even briefly tempted to print out some of the articles and mail them anonymously to both GP’s . . . :devil::lol:
Lisa, I forgot to mention –
How on earth do they confuse RA w/ OA? Like confusing apples with grapes just cause they are both fruit. They are not that similar. Can you tell it annoys me? :-/
I think there is still a great deal of confusion about what tests give a clear picture of RA (and many other autoimmune diseases). The way labs are run at many places don’t help, either. When I was doing my internship in laboratory medicine, I spent a whole day running ANA tests. The tests were batched because they took the whole day to do and were a real pain in the rear because of the multiple steps involved. So, when it came time to ‘read’ the tests, the tech would often ‘guess’ the dilution of the test. She would say that “that looks like a 1:80” or “this one is a 1:320”. Now, the correct way is to actually perform a dilution with the serum. The last dilution that is positive is what should be reported along with the pattern of immunofluorescence and read like this: “positive to a 1:640 with a speckled pattern”.
That’s just one example. I am ALWAYS suspicious about the results of my test, especially the ones that have to be interpreted.
Most doctors are not aware of the limitations of these tests. A lot of them try to use them as substitutes for good clinical judgement–I think this is a very big reason why a lot of RA patients get overlooked in early dx. They really need to listen to the patient–talk with them! Ask them questions! They often have the answers right there and yet they insist on sending the patient off to get lab work done that may or may not be positive. Lab tests are like fishing nets–you can catch a lot but you will always have some that slip through!
It drives me nuts, nuts, nuts!
Drae, Thanks for telling about your experience. I’ve read about problems with CRP and sed rate tests, too. Do you have experience with the Rf or the anti-CCP? I’m curious to know what you think can go wrong with these.
People are not aware that all labs do not have the same reporting methods or reference ranges either. My good GP taught me to look at the values, not just the flags. He knows that some of the ranges given are not appropriate. At times, he’s prescribed supplements saying, “I don’t like this value.”
What I want people to know about tests is that they are not “proof” of anything. It’s good we have them, but they are a long way from what people expect them to be. Unfortunately, you are right that that includes doctors as well.
Maybe someday, there will be test for RA that is a straight thumbs up or down, but I think that is a long shot in our lifetimes because RA is too heterogeneous.
What can patients do when they know more about their labs than their doctors? I’ve seen docs use labs to diagnose or to treat several conditions. The test is never questioned. It is assumed that the patient is “wrong” even with a broken pelvis.
I agree with you that doctors need to ask questions, but often it is quite the opposite. Patients do not get a chance to explain their symptoms. They are cut off, minimized, or otherwise told to be quiet and listen. It is often assumed that they are exaggerating or otherwise malingering. Without accurate labs, the only hope is to keep looking until one finds a doctor who listens.
Hi Kelly,
You are welcome!
I want to take a moment and thank you for your work on rheumatoid arthritis. I cannot express how wonderful it is to see full attention devoted to the impact that RA makes in people’s lives.
To answer your question, yes, I have done RF tests before. I’ve never done anti-CCP–it wasn’t available yet (dating myself as past 35 years old here!). RF has several reasons to explain its limitations. Most clinical assays rely on testing IgM and it binding to IgG. RF can be IgA, IgM, or IgG class antibodies. I’m pretty sure that there are some assays that can test for RF from IgG and IgA but they are not usually done because they are difficult to perform and very, very expensive. So, if a patient’s antibodies are not IgM class, they will be missed. I think there are a lot of ‘undiscovered’ antibodies that have not been found, much less find economical and practical ways of testing for them. Even now, doctors are urged not to use these tests for screening purposes but only in patient populations that have a high degree of suspicion. How is a doctor going to suspect anything unless he or she spends a great deal of time effectively communicating with the patient? These tests have a lot of limitations but even if they didn’t, they don’t take the place of good investigative work and open communication. Too many doctors try and short cut this by ordering tests thinking this will provide ‘answers’. And rheumys are encouraged NOT to do this because it is the wrong approach!
To be fair, I don’t always think that it is the fault of the doctor. They have gone to school, done their internships, and residencies in one of the most medically advanced countries on the Earth. Unfortunately, I believe it makes many of them dependent on technology and weak on good medicine.
I hope I didn’t babble too much. It’s been a long day!
Thanks, Drae. All things I knew or suspected. Funny, I was just curious of whether there was more “dirt” on the tests that I haven’t uncovered. Haha. Really good to talk with you about this.
If you’ve seen many RA blogs, you may notice that most people with RA seem to have gotten the “hysterical” woman diagnosis at one point because either the sed rate, Rf, or CRP came back “normal.” I don’t see docs as the enemy, but there is an undeniable prejudice against diagnosing RA. I tell people to make that work for them like this: Well, if the doc says you have this / need this medicine, then you probably do since they’re so hesitant to diagnose.
I’m just sad about unneeded suffering due to delayed diagnosis. I hope we can make a difference.