Getting a Definitive Diagnosis Can Be a Frustrating Process

As is the case with many conditions, rheumatoid arthritis cannot be diagnosed with a single test. A diagnosis of RA is made primarily using results from the physical examination. However, your doctor will also likely conduct laboratory testing and imaging, and also assess your medical history to determine whether you have RA. In our 2013 RA In America survey, the majority of respondents reported receiving a physical examination and/or laboratory testing for rheumatoid factor during the initial diagnosis process, while many also provided a medical history and X-rays. Unfortunately, the process of diagnosing RA can take some time, and although sometimes a person may show several physical signs of the disease, initial blood work may be inconclusive. This process can be quite lengthy, which is quite frustrating to many. One of our Facebook community members reached out to us because she believed she was experiencing several symptoms of RA, but she was having trouble getting definitive answers about her diagnosis.

Community Question:

Hi there. I was wondering if you my give me some advice. I’m feeling very frustrated and confused. I have been having joint pain throughout my body (my hands, my feet, my neck, shoulders, elbows and knees). My knuckles on my fingers show visible signs of swelling and some of my knuckles have large sore bumps on them. I can’t make a fist with my left hand as it hurts so much! My toes get red, hot and swell and make it very painful to walk. I went to my family doctor and he had X-rays done of my hands and feet and sent me for blood work. He tested my ANA, sed rate and CRP. I went back today to the doctor to get results and everything came back completely fine!!! I feel like I’m losing my mind! He referred me to a rheumatologist even though everything came back with no signs. My question I guess is, how can my blood work and X-rays be good when I have visible signs of swelling and I’m having a lot of pain? I feel like I’m crazy or something! Oh and all my doctor said was this could be early onset RA and why nothing showed up in my blood work, but I think he was basically guessing! I feel frustrated because I thought today I was going to get the answers to why I feel like I do but instead I was told there is nothing wrong?

Response from Andrew Lumpe:
lumpe-andrew-thumb
Sorry for your frustration. Your doctor is very wise in sending you to a rheumatologist to further check out your symptoms. I suspect that the rheumy will run some more tests including rheumatoid factor and anti-CCP, which are more specific for RA. They will also do a thorough physical exam. Many of the autoimmune diseases are diagnosed clinically based on many factors and not just one blood test. And unfortunately, the blood tests are not all that accurate. In fact upwards of 30% of RA patients are what is called “seronegative” meaning that they don’t have positive tests. And that’s also common with early stages of RA. This is what happened to me as I had symptoms but no positive blood tests for several years. I know it can be maddening not knowing what’s going on but a good rheumy will be like a detective and will get to the bottom of what’s going on. Hopefully you’ll know something soon and can get on a treatment plan.

Update from Community Member:

Just wanted to update you. I had my second rheumatologist appt. this morning. She gave me the diagnosis of UCTD (Undifferentiated Connective Tissue Disease) and said I have symptoms similar to Lupus. To me this sounded kind of like she wasn’t sure what is wrong with me so she gave me that diagnosis but she kept assuring me that is was a real disease. She also started me on Plaquenil. I guess I am just wondering if you have heard of this or anyone in the group has been diagnosed this way or are being prescribed Plaquenil. Thank you.

Response from Andrew Lumpe:

Thanks for the update. Yes, I’ve heard of UCTD. Sometimes that is used when the diagnosis is not yet clear. Maybe in the early stages of disease. But these autoimmune diseases are complex and not completely understood. It’s a good thing that you at least got a diagnosis so you could start treatment. Plaquenil is a common disease-modifying drug (DMARD), which helps impact the autoimmune response. I hope it works for you. Keep monitoring your symptoms and see your rheumy. Sometimes it takes sometime to find the right medicine combination. I’m sure you doc told you that Plaquenil can impact the eyes so monitor that possible side effect.

How long did it take before you received a definitive diagnosis? Were you referred to a rheumatologist right away? Tell us about your experience in the comments!

Comments

View Comments (6)
  • mcadwell
    1 year ago

    I’ve been experiencing a lot of pain for 16 years, have seen over 25 doctors (6 of them rheumatologists), spent a small fortune on tests and still don’t have a definitive diagnosis.

    Each and every one of my tests comes back within normal range. My current rheumatologist is treating me for RA but won’t tell me I have RA because he can’t get enough synovial fluid out of my swollen knuckles for testing.

    I’m about ready to blow a gasket with all this pain and the not knowing.

    Sigh

  • agsides
    3 years ago

    I’m currently listed as sero negative with polyarthritis. I’m headed to my new Rheum. in July for a six month check up after the original diagnosis. I’m hoping for a firm diagnosis then and some additional treatment since I’m having more issues.

  • 1rgwoyu
    4 years ago

    I have hypothyroidism and started having some soreness in my fingers and toes. I thought my thyroid medicine wasn’t working, and I went to my family Dr. He immediately suspected RA but I doubted that. He did blood work and it came back positive without doubt. He then sent me to a rheumatologist and he did more blood work which confirmed the diagnosis of RA, and then diagnosed me with lupus as well. What a shocker! I was not prepared for this. I was started on plaquenil and Celebrex and am now on sulfasalazine as well and so far so good, it’s been close to a year.

  • Kellie
    4 years ago

    You are the only other person I have heard of with the same diagnosis I had. It was later changed to RA. I did a lot of research on it. Don’t worry, the treatment is the same. I was serum positive the second time I had the RA test. I had high results in other areas every time. Hopefully at some point down the road things will clarify. In the meantime make sure you let your rheumatologist know if your meds aren’t working. There are other drug options. Many take a few months to start working so keep on top of it.

    Hope you are feeling better!

  • Ali
    4 years ago

    I’m so sorry you’re having a hard time being diagnosed. I was lucky with my RA diagnosis but unlucky in other ways with fibromyalgia and complicated stomach issues. I know how emotional all of this can be. Make sure to take care of self by nourishing your body. When I was diagnosed with RA I immediately cut out night shades aka potatoes, tomatoes, eggplant and peppers as they are known to cause inflammation. Hope some of this helps. You are not alone!

  • Christine Corsa
    4 years ago

    I have been going through the same thing for over a year now. After numerous tests, with RA and Lupus both being possible causes I finally got a definitive diagnosis. It seems that this is often the case,especially in the early stages of the disease.

  • Poll