A diagnosis of Sjogren’s Syndrome can be challenging. The Sjogren’s Syndrome Foundation (through surveys) determined that it takes an average of 4.7 years to be diagnosed with SS. There are several reasons for this:
- The symptoms of Sjogren’s Syndrome (fatigue, joint pain, dry eyes) are often seen in an aging population.
- SS symptoms can easily be confused with similar autoimmune or nervous system diseases, such as lupus and fibromyalgia.
- 20%-40% of patients with SS are estimated to have negative results for SS related antibodies. This is commonly known as ‘seronegative’ Sjogren’s Syndrome.
I have personally experienced diagnosis issues around the 2nd and 3rd points. As a seronegative SS patient, I ended up visiting several doctors before finally finding a rheumatologist who was willing to diagnose me based on my classic Sjogren’s symptoms rather than on test results. Which brings me to an important point concerning Sjogren’s Syndrome and diagnosis:
If your doctor is not willing to take you seriously, find a new doctor.
Switching doctors can be somewhat challenging if you have a limited health insurance plan, but you shouldn’t settle for a doctor (specifically a rheumatologist) who isn’t willing to work with you to diagnose and treat your illness. Ask patients in your area and read Internet review sites such as Yelp and RateMDs to ensure that you can find a doctor who respects his or her patients. You can also review my post on finding a good rheumatologist/doctor.