Skip to Accessibility Tools Skip to Content Skip to Footer

Seronegative RA, the Piano Player, and a Delayed Diagnosis

By the time I finally received the diagnosis of rheumatoid arthritis, it was not an unexpected surprise.  I had experienced strange symptoms for years.  “My hands just don’t feel right,” I told my primary care doctor in 2004.  “My mother has lupus, could I be developing something like that?,” I asked.  My doctor drew some blood and ordered a battery of tests.

Inconclusive RA diagnostic tests

Results from the blood tests were inconclusive.  My SED rate (erythrocyte sedimentation rate), a nonspecific measure of inflammation in the body, was somewhat elevated at 31.  My rheumatoid factor was a low 5.3 and ANA was negative.  I received no diagnosis and began to use topical “arthritis cream” to try to deal with the mild pain.  A year later, I was being tested for multiple sclerosis, a diagnosis which I did receive after a few months time.

RA symptoms leading up to diagnosis

In the fall of 2006, I was hired to play at a local church on Sunday mornings.  It was going well… until I began unexpectedly missing notes, that is.  Besides being embarrassed and a bit mortified, I became concerned.  Was my MS causing stiffness and lack of coordination in my hands?  I talked to the neurologist who believed that I was developing carpal tunnel syndrome… in both wrists.  Traditional therapy included taking anti-inflammatory medication and wearing splints.  Neither really helped much and I developed excruciating pain and couldn’t use my hands.

After being referred to a hand surgeon months later for consultation and steroid injections into each wrist, I finally received some blessed relief.  The hand surgeon told me that if the pain returned, he recommended surgery to release the carpal tunnel.  But he also told me that he thought that I may be developing rheumatoid arthritis.  This surgeon paved the way for me to see an excellent rheumatologist in the area.

During my initial appointment with the rheumatologist, I finally received the diagnosis of RA.  That was in the spring of 2007.  She looked at my hand x-rays and previous blood work.  She also used ultrasound to examine my hands for inflammation and bone erosion.  The images on the ultrasound screen revealed both mild erosion and inflammation.  I was told that I probably had shown subtle signs of early RA years before, but that many doctors don’t recognize it if the blood work is “normal” or seronegative.

Beginning RA treatment

My rheumatologist didn’t hesitate to begin me on disease-modifying anti-rheumatic drug (DMARD) treatment.  She did, however, have my blood tested for infections first (such as tuberculosis or hepatitis).  It is important to receive any necessary vaccinations or treatment before starting a DMARD.

Because some of my fingers had been so greatly swollen for so long, I was experiencing problems with my joints.  The middle finger on my left hand had been twice its normal size, and now it was beginning to develop a boutonniere deformity as the tendons were under so much strain.

That first summer I worked with a hand specialist in the occupational therapy department of the regional hospital.  In addition to learning good joint protection techniques, my specialist molded personalized splints for my fingers in an attempt to not only keep the deformity from getting worse, but to prevent further damage while I waited for drug treatment to kick in.  This approach worked and permanent damage was minimized.

By that fall, the methotrexate and sulfasalazine worked to control the inflammation and pain.  I was doing much better, so much so that I could finally play the piano again.  I’m thankful that I found a rheumatologist who didn’t rely solely on blood tests to diagnosis RA, especially since my RA is seronegative.  In fact, the highest my SED rate has ever tested was that first time in 2004 when my hands “just didn’t feel right.”

The road to diagnosis can be long and painful for some.  Don’t give up.  If you think that something is wrong, mention it to your doctor.  Keep your doctor informed if the symptoms don’t get any better.  It might take a while, but hopefully, you will find answers like I did and a treatment plan which works.

 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Angeldream
    1 month ago

    I have been battleing with RA since I was 34 and my treatment was just 10mg of prednisone until 50 when my bone density showed osteoporosis, I was not advice to take VITAMIN d3 seriously or Boniva to strengthen BONE, then Enbrel in 3 months deformed my hand, moved to Humira and paralyzed my legs! Now In a wheelchair and fighting with Hmo’, my RA Dr very frustrated with my condition suggested an infusion but my Chiropractor suggested to test for Toxicity and when I got my tests, I was loaded of LEAD, Mercury and more! Lived across the beach all my life and old plumbing tents to get very rusty! I was advised to CLEAN toxicity and then try the medications again, the problem that treatment Quilation takes for ever to remove my Toxicity, so I had to go through Plasmapherisis and I felt much better but it’s 3 grand per treatment and I needed approx.5 treatments, now I have a wonderful PRIMARY young Female who understands Toxicity and have scheduled an appointment with her associate Rheumatologist to work on a treatment plan and pray that I can get rid of wheel chair. Blessings.

  • Elucid
    3 months ago

    I’m afraid I have seronegative RA. I will have flares when my hands, feet, and elbows are terribly painful. But the rheumatologist I saw did tests, they were negative, and she turned me away, telling me I must have fibromyalgia. Well, that doesn’t act the same way!

  • Lisa Emrich author
    3 months ago

    Hi Elucid,

    I’m so sorry that you are having troubles finding a diagnosis. Being seronegative did delay my own diagnosis for quite some time. Unfortunately, something serious (lots of pain, loss of function, and severe numbness in my hands) had to happen before I had a doctor take it seriously.

    Don’t give up. You can always get a second opinion. If you ever see visible swelling and redness, consider taking photos so that you can show those to the doctor. In my case, I had a finger that swoll up double its normal size; that was hard to ignore. But my blood work still looked “normal.”

    Good luck. I hope that you can find answers and relief soon.

    Best, Lisa

  • Poll