Diagnosing Sjogren's Syndrome

Lisa Stege

Sjogren's syndrome is not just dry eyes and dry mouth. I know that because both my daughter and I suffer from the disease. I want to share our story to make physicians in Louisville aware of Sjogren's syndrome so that others can be diagnosed early and accurately after onset of symptoms.

In my case, I began to experience fatigue so severe I couldn't get out of bed or even raise a pencil. Imagine becoming sick at age 26 with joint pain, going from doctor to doctor and having treatments that turned out to be unnecessary and surgeries that never helped. I started to think I was crazy or a hypochondriac. I knew I was sick, but the doctors just kind of blew me off.

In 2006, my right submandibular gland swelled so badly that I ended up in the hospital. I had a stone lodged in that gland. I became septic and would not respond to antibiotics. My ENT called in an infectious disease specialist for more aggressive treatment. It was so painful I couldn't even swallow my own saliva. My throat almost closed off. I kept telling the nurse I knew I was going to die. I knew something was seriously wrong because my husband is a physician and he stayed with me in the hospital almost all night. It was later that he told me I could have died. I had a PIC line put in and had to be on two different IV antibiotics for two weeks every six hours around the clock.

My ENT wanted to get the infection down before removing the gland. One month later, he removed the gland and had it biopsied. Nothing was abnormal. One year later, the left gland began to swell so badly that he had to remove it. Because the gland was so scarred, my ENT suspected I had Sjogren's syndrome. However, the pathology report showed chronic inflammation with no specific mention of Sjogren's.

I continued to have joint pain and fatigue. It felt like I had the flu all the time. I couldn't even stand up in the shower. In 2009, I lost my mother; in November 2010, the symptoms associated with Sjogren's syndrome hit full-blown. I finally got some positive tests. My husband said that biopsy specimens should be kept for 10 years, so we called the pathologists and asked for tissue confirmation to diagnose Sjogren's syndrome. Both pathologists from 2006 and 2007 said the findings were consistent with Sjogren's syndrome.

After more than 20 years, I finally knew what was wrong with me. This disease is the second most common connective tissue disease, with rheumatoid arthritis being the most common. I am hoarse all the time because of the dryness in my trachea. My vision has gone from 20/20 to 20/80. I have to wear 3.75 cheaters to see at a distance. I can't see the numbers on the phone; I just count the buttons by touch. I also have severe neuropathy pain and joint pain. I have lost 30 pounds. On the average, my weight was 118-124 pounds before this hit me. I used to do tae kwon do four or five times a week as well as yoga. But when this hit me, it was like a thief in the night. It took a lot from me.

Unfortunately, Sjogren's syndrome is also hereditary; our 29-year-old daughter has it, too. Her problems began with her autonomic nervous system. Her heart rate would go as high as 286 beats per minute. She would go to the ER to get a shot that would stop her heart and return it to a normal rate. She was diagnosed with called POTS (Postural Orthostatic Tachycardia Syndrome). We took her to the Mayo Clinic two times and they couldn't fix the problem. That's when I started researching and found that POTS could come from SJS. Now, she experiences the same dry eyes, dry mouth and joint pain as I do.

Currently, the National Institutes of Health are funding a study called the Sjogren's International Collaborative Clinical Alliance to improve the diagnosis and treatment of the disease. I traveled to Johns Hopkins on three days' notice to participate. I flew to Baltimore on a Thursday night and was seen Friday morning. I could have just gone to be treated at the Johns Hopkins SJS Center, but I knew firsthand how important this research was. I underwent a painful lip biopsy as part of my participation.

I want to keep some people from getting so sick because they have not been diagnosed or they have been misdiagnosed. SJS mimics multiple sclerosis, amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), Parkinson's disease and Alzheimer's disease. I also have become an ambassador with the Sjogren's Syndrome Foundation to educate doctors so they can look outside the box. Some key points I've learned are:

  • Sjogren's syndrome affects as many as 4 million Americans.
  • Nine out of 10 people who develop Sjogren's syndrome are women.
  • Most patients are diagnosed in their late 40s.
  • It takes an average of seven years to properly diagnose the disease from the time initial symptoms appear.

I hope the story of my long road to diagnosis, even as a doctor's wife, demonstrates the need for physicians to give careful attention to this terrible disease so that we can treat the symptoms effectively and prevent the serious complications associated with Sjogren's syndrome.

 

Note: Lisa Stege is married to George C. Stege III, MD.

 

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