Comments on: How is Rheumatoid Arthritis Diagnosed? Part 2

By: Kelly Young

Kelly Young — Sat, 02 Apr 2011 22:10:46 +0000

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.

By: Steve

Steve — Sat, 02 Apr 2011 21:53:23 +0000

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.

By: Kelly

Kelly — Tue, 07 Jul 2009 23:28:22 +0000

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!

By: andrew

andrew — Tue, 07 Jul 2009 22:37:41 +0000

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.

By: Kelly

Kelly — Tue, 07 Jul 2009 19:39:38 +0000

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?

By: andrew

andrew — Tue, 07 Jul 2009 19:19:13 +0000

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.

By: Kelly

Kelly — Tue, 07 Jul 2009 01:59:49 +0000

Well said, Jenny.
I wish your dr would start a special school to train doctors to be such good listeners!

By: Jenny L.

Jenny L. — Tue, 07 Jul 2009 01:44:00 +0000

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.