Talking about RA: Reducing the Time to Diagnosis

This is an article all about RA, not about food.  But it’s something I have been thinking about.  Kelly at RA Warrior is hosting a blog carnival about the issue of reducing time to diagnosis so I thought it was the right time to discuss this.

In my early 20s I had an “episode” where I was in incredible pain and no one knew what was wrong.  I had all sorts of tests done, and everything looked fine.  The military doctor who wanted me gone told me it was fibromyalgia.  I did all sorts of research and said things like “But I don’t have pain in all four quadrants.  It’s jut in my hands!” and he just dismissed me.  I did massage, I quit my job, and eventually things got better.  I had 2 children, ran a marathon, moved all over the country with my military husband, and assumed it had just been a blip on the radar of life.  My hands never stopped hurting but I just assumed it was a “part of being me.”

Towards the end of 2009 I started having all sorts of pain.  Hip pain and fatigue, and my hands started getting worse.  My gp did all sorts of tests and put me on large doses of steroid.  My blood tests all came back normal, but things didn’t really get better.  The positive thing here was that he said “This is beyond my expertise” and easily agreed to send me to a specialist.  (I think his exact words were “I have never seen this before.  That is not a good thing.  You want me to say “Oh yes.  I’ve seen this a thousand times.  This is how we treat it….”)  The negative was that I was the one who said “I want to see a rheumatologist.”  I knew what we were probably dealing with (Well, I knew the family.  I didn’t know the exact relative was going to be RA) so I was proactive.  I wish HE would have said “I’m going to send you to a rheumatologist”  Living in a small town, I said I wanted to go to the city to see someone with expertise.  (There is a good person locally but the wait is close to a year.)  I was willing to drive the 2+ hours to see someone who might be able to help.

Because I was proactive and a bit educated on what me might be dealing with, my road to diagnosis was shorter.  I wish that all GPs were willing to easily say “I don’t know” and send people to someone who specializes.

I got in with a wonderful rheumo at a high quality research hospital.  With her I started realizing that things I hadn’t thought about (like the fact that I could no longer wear my wedding rings due to the swelling in my hands) might mean something.   When I presented her with pictures of my swollen purple ankles she took it in stride.  When I told her I kept losing my voice she didn’t say “It’s because you are a teacher and talk all day” but in fact noted it as a possible symptom.  And she never looked at all my normal test results and said “Sorry.  You’re fine.  There is nothing here” like the military doc had done.  It took about 9 months to truly get to diagnosis, but I always knew SHE BELIEVED ME.  When you are sero-negative as I am, there is always that bit about “maybe it’s in your head.”  That was brought home to me yesterday when I met with my brand new GP.  (My previous doc moved.)  As we were discussing my issues and I mentioned that I was sero-negative she said, with feeling “Wow!  You must have had a time getting diagnosed!”  So even medical professionals know that there are flaws in the system.  Thank God for doctors who listen to their patients and try to get them help even if it means admitting you don’t know something.  We need more of those sorts of doctors and for them to serve all patients regardless of insurance status.

As an aside, neither my new doc nor her nurse flipped out when I said the word “vegan.”  They said, quite calmly, well we might need to get you on some supplements and the doctor even said she could find supplements without animal bones in the ingredients.  I love that it was not reason for them to scorn me or feel the need to “change me.”  How wonderful that we might be moving towards a time when we can try to help people feel better and get better by looking at the whole person.  If that was the prevailing philosophy in medicine we would definitely be moving towards a shorter time to diagnosis for autoimmune disorders.


3 responses to this post.

  1. As an aside, neither my new doc nor her nurse flipped out when I said the word “vegan.”
    Good idea! Vegetarians and more so vegans should increase intake of omega-3 fatty acids and dcrease omega-3 fatty acids at the same time.
    Best wishes, Lothar
    (@Rheumatologe / vegetarian)


  2. Posted by Mark on January 10, 2011 at 5:48 PM

    Great blog post and truly helpful for those in that unecessary and disheartening ‘we don’t believe you’ stage. The problem is that they don’t know they are in that stage because they don’t have the diagnosis!
    Best wishes.


  3. Thanks for adding your blog to the carnival, Jen.

    Apparently, “belieiving” the patient is a big part of solving this problem of proper diagnosis & treatment. It should not be so. At this point the only thing I can recommend to patients is the “second opinion” until a doctor who listens is found. I’m so glad you’ve found yours.


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