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.

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.

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 showed subtle signs of early RA years before, but that many doctors don’t recognize it if the blood work is “normal” or seronegative.

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.

 

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