Aug 11, 2011

A Definitive Diagnosis At Last? Is Sjorgen's Syndrome causing my POTS?

I got a call from Cleveland Clinic last week.  My lip biopsy taken the week prior tested positive for Sjorgen's Syndrome.  WOW!  I have had 1001 blood tests for autoimmune diseases like Sjorgen's and Lupus and all have been negative.  This is the first time a test has come back positive that may explain WHY I developed neuropathy and POTS.  I have been searching for the cause of my POTS since the first day I realized I had it, and this may be the answer I was looking for.  It's not a good answer, but it's better than no answer.  At least now I have a chance to try therapies that may improve my symptoms and help me get my life back.

My Cleveland Clinic neurologist wanted me to have the lip biopsy for Sjorgen's, even though my SS-A and SS-B antibody tests for Sjorgen's were negative.  I didn't think I had Sjorgen's which is commonly associated with dry eyes and dry mouth, but my doctor insisted that this lip biopsy was an important test to rule out Sjorgen's.  He said that 40-70% of the people who actually have Sjorgen's test negative on the SS-A and SS-B blood tests, and the lip biopsy is considered the gold standard.

Sjorgen's Syndrome (pronounced SHOW-grins) is an autoimmune disease in which your own immune system goes into overdrive and attacks your own healthy cells.  Sjorgen's antibodies commonly attack exocrine glands, which are the glands responsible for producing moisture and healthy mucus that lubricate your eyes, mouth, sinuses, gastrointestinal tract, lungs and other areas.  Sometimes Sjorgen's presents with "extraglandular" manifestations, meaning it harms something besides just exocrine glands.  In my case, it looks like Sjorgen's has damaged some of my autonomic and sensory nerves.

The Sjorgen's Syndrome Foundation has an informative chart that lists some of the impacts of Sjorgen's on the human body.  Sjorgen's is the most common autoimmune disease in the US.  There are at least 1 million people in the U.S. currently diagnosed with Sjorgen's, and experts estimate that there are another 3 million people with it in the US who have not been diagnosed yet.  The average Sjorgen's patient takes 6-7 years to get a proper diagnosis.  Due to the lack of knowledge about this syndrome and the difficulty in diagnosing it, there are probably many people living with Sjorgen's who are misdiagnosed.

There is currently no cure for Sjorgen's, but there are medicines used to help alleviate symptoms.  Many Sjorgen's patients use prescription eye drops, like Restasis or gels at night to alleviate dryness of the eye. Some even have silicone plugs inserted into their tear ducts to retain as many of their tears as possible.  There are also drugs used to increase tear and saliva production.  For patients with organ involvement, immunosupressive drugs, like Prednisone and Methotrexate are used.

I am looking for a Sjorgen's Syndrome expert, so if any of you can recommend one, I would really appreciate it!

1 comment:

  1. Very, very interesting. And the theory that it could have attacked your autonomic nerves certainly makes sense. I have always suspected POTS was some type of auto-immune thing.