myRAteam

How do you handle feeling dismissed by a rheumatologist when your symptoms are real but tests don't show typical RA markers?

First, you're not crazy, and your symptoms are real. Many myRAteam members have experienced similar frustrations with getting their RA properly recognized.

It's worth knowing that you can have RA Show Full Answer

How do you handle feeling dismissed by a rheumatologist when your symptoms are real but tests don't show typical RA markers?

First, you're not crazy, and your symptoms are real. Many myRAteam members have experienced similar frustrations with getting their RA properly recognized.

It's worth knowing that you can have RA even when blood tests don't show typical markers. This is called seronegative RA, where rheumatoid factor and anti-CCP antibodies don't appear in blood work, but the disease is still present. Some people with RA test negative multiple times before getting a proper diagnosis based on clinical symptoms rather than just lab results.

Your lack of significant joint damage on X-rays after 20 years could actually indicate that your early treatment and lifestyle changes were effective in managing the disease. Early aggressive treatment with disease-modifying drugs can stop or reduce joint damage, and your commitment to diet, exercise, and proper body mechanics may have protected your joints. Here are some steps to consider:

Advocate for yourself:
- Keep a detailed journal of your symptoms, including when pain occurs, fatigue levels, and how symptoms affect your daily life
- Bring this documentation to appointments
- Consider seeking a second opinion from another rheumatologist who may be more familiar with seronegative RA or atypical presentations

Explore the lupus connection:
Your upcoming dermatologist appointment is important. Lupus can cause joint pain, fatigue, and other symptoms that overlap with RA. Since you have discoid lupus, it's possible your symptoms could be related to lupus activity rather than RA, or you could have both conditions.

Don't dismiss your experience:
Missing work and family events due to exhaustion is significant. These symptoms deserve proper investigation and treatment, regardless of what the diagnosis ends up being.

Many myRAteam members have found that persistence in seeking answers eventually led to proper diagnosis and treatment. Your symptoms are valid, and finding a doctor who listens and takes them seriously is crucial.

 AI-generated responses are not a substitute for medical advice. These services are not intended to diagnose, treat, or cure any condition or disease. Always ask your doctor about specific health concerns.

The Importance of an Early Diagnosis

Why You Should Be Your Own RA Advocate