Diagnosis

According to the Sjogren's Syndrome Foundation, it takes an average of 7 years to get a Sjogren's diagnosis. 7 years? I'm jealous. Do you know how long it took from my first symptoms until diagnosis? About 25 years. Yes. 25. If you cut it back to my first complaint to a doctor, that knocks it back to 20 years.

Why so long? The biggest reason is that the hallmark symptoms of Sjogren's - the dry eyes and dry mouth - are treated by optometrists and dentists, respectively. These two don't usually report anything to your family doctor, so no one ever makes a connection.

For me, I was finally given a (tentative) diagnosis about 2 years ago. I say "tentative" because I only have about half of the required "markers" for Sjogren's. They run four tests - two for saliva production and two for tear production. For the "spit test," they were able to determine I didn't produce enough saliva, but the lip biopsy was inconclusive. (A lip biopsy is where they take a couple of salivary glands out of your lower lip for testing.) The same thing happened with the tear production tests. The less invasive test found low tear production, but the more invasive one didn't. So my diagnosis is based on a "partial positive" and other symptoms I can observe and report to my doctor.

So what are my symptoms? Everybody experiences it differently. Here are the big ones I can think of off the top of my head.

• Dry eyes
• Dry mouth
• Dry sinuses
• Fatigue
• Heartburn/reflux
• Arthritis, particularly in my lower back
• Headaches
• Irritable Bowel
• Cognitive regression (the dreaded "brain fog")
• increasing memory lapses
• inability to focus

I'll discuss these in more depth in future posts. For now, here's a time line on how they appeared:

High School:

• Long slurps at the water fountain between every class.
• Mild lower back pain
• Cheeks that would turn bright red and burning hot for no apparent reason
• Fatigue
• Early bedtime every night - in bed by or before 9 pm without parental involvement.
• Inability to get up for school some days, or needing to leave school early
• General weakness (occasional)
• Frequent headaches (started at age 9)

Early College:

• Dry eyes
• Heartburn
• Fatigue
• Frequent headaches

Later College - partial remission

• Perfect attendance
• Superb concentration
• straight A's
• organized study
• methodical practice on my trumpet
• 3 jobs
• Early start to the day - on campus voluntarily by 7 a.m. to practice
• Dry mouth that was particularly noticeable and bothersome

Early career:

• Fatigue
• Dry sinuses
• Dry eyes
• Dry mouth
• Frequent headaches

Grad School:

• Dry sinuses
• Dry mouth
• Dry eyes
• Frequent headaches
• Fatigue
• Heartburn
• Cognitive regression, memory lapses
• Hypothyroid

2nd career:

• Dry sinuses
• Dry mouth
• Dry eyes
• Dry skin
• Daily severe headaches
• Increasing fatigue
• Heartburn/reflux
• Hypothyroid, severe weight gain, hair loss
• Increasing cognitive regression and memory lapses
• Increasing arthritis pain
• Pulmonary Embolism

After the Pulmonary Embolism in 2010, all of my symptoms kicked into high gear and I started earnestly searching for an answer. Well...it's more like increasingly frequent trips to the doctor forced someone to sit up and pay attention.