THE SJÖGREN’S SYNDROME FOUNDATION
The web site for the Sis Foundation, which is based in Baltimore, Maryland. The Sis foundation offers information and support for patients, education for medical professionals, and advocacy for increased awareness of the disorder in the general public, media and government. Their re-designed web site (2009) offers information about groups, help lines and resources available to members. Dr. Carteron is a member of the Board of Directors of the Foundation.
THE AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION
A national organization whose mandate is to inform patients and professionals about the 130 autoimmune diseases and educate everyone to their prevalence and possible treatments.
THE ARTHRITIS FOUNDATION
The central web site for arthritis and related disorders. There is a subsection devoted to Sis. Comprehensive and easy to use.
This is a worldwide Internet community created for those who have Sjögren’s syndrome. It is a place for all to meet and share experiences and knowledge with others who live with Sjogrens in order to improve quality of life.
NATIONAL INSTITUTES of HEALTH
Sjögren’s Syndrome clinic
10 Center Dr.MSC 1190
Building 10. Room 1N113
Bethesda MD 20892-1190
BRITISH SJÖGREN’S SYNDROME ASSOCIATION
News about regional and national meetings with questions and answers.
THE NATIONAL DIGESTIVE DISEASES INFORMATION CLEARINGHOUSE (NDDIC)
This is a service of the National Institutes of Diabetes and Digestive and Kidney Diseases, part of NIH. Good site for information and conditions like constipation and celiac disease
IRRITABLE BOWEL SYNDROME SELF HELP AND SUPPORT GROUP
Online resource for IBS.
THE NEUROPATHY ASSOCIATION
Answers questions through an active chat line, provides hints, and links to membership in the Association.
AMERICAN PAIN ASSOCIATION
Helped launch American Pain Foundation, which is a non-profit organization to help patients as information source and advocacy center. It has looks to many more information sites including those that help locate accredited pain clinics, physicians and therapists, information about alternative/complementary medicine; information about Medicare and Medicaid. They also offer online support for sufferers of pain.
INFORMATION ABOUT HEALTH PLANS AND PATIENT ASSISTANCE
PATIENT SERVICES INCORPORATED
A non-profit organization that specializes in co-payment waiver assistance for people with chronic illnesses.
THE NATIONAL COMMITTEE for QUALITY ASSURANCE
Provides free access to detailed report cards on health plans, clinical performance, member satisfaction, access to care, and overall quality on its health plan report cards online.
The most common blood tests associated with Sjögren’s Syndrome look for SSA (Rho) and SSB (La) antibodies. Both of these antibodies are directed against a ribonuclear protein that is often present in the cells of Sjs patients. The presence of both SSA and SSB antibodies is highly suggestive of Sjögren’s syndrome. The SSA antibody is also commonly seen in lupus and congenital heart blocks.
Antinuclear antibodies (ANAs) are autoantibodies that are directed against self DNA present in the nucleus of cells. The presence of ANAs in a blood test is a hallmark of autoimmunity.
(For further discussion of ANAs, complements, and other protein groups associated with autoimmunity and tested for in the blood, see A Body out of Balance, 2003.
Salivary Flow Measurement
This is a measure of the rate of salivary production flow from the salivary glands in the mouth. Normal flow is greater than 1.5 ml in fifteen minutes.
Parotid Flow Measurement
A measure of the rate of saliva flow from the parotid gland which is found in the cheek near the eye. Dye is placed in the duct to look for blockages and inflammation.
Salivary Gland Biopsy
A small piece of tissue is removed from a minor salivary gland, usually on the lower lip, after a local anesthesia is injected near the site. A stitch closes the site and the tissue sent to the lab. The site will remain numb for a while, and you may experience pain afterward due to the high concentration of pain fibers in the tissue. The biopsy will be examined by a pathologist for the presence of lymphocytes (white blood cells).
A radioactive imaging material is injected into a vein and images taken at various time intervals. As the radionuclide circulates, it will accumulate in inflamed tissue and be visible during the scan. The tissue will then be biopsied for more specific information.
If your physician notices neurological symptoms such as regional numbness or weakness during your physical examination, she will likely refer you to a neurologist for further testing. A biopsy of the skin along the affected nerves can detect small fiber neuropathy that cannot be found with other methods such as nerve-conduction studies.
The physician will begin by looking in your eyes to assess the state of the tear film. A careful examination through a slit-lamp biomicroscope will give a three-dimensional view of the eye’s surface and show tear quality, quantity and surface damage. The doctor will look for debris or mucin and signs of inflammation on the eye as well as under the lower lid.
The doctor will perform a simple Schirmer’s test to ascertain if the lachrymal gland is producing tears and of what volume (the quantity during a specific time) they are. During this test, filter paper strips about ½”x 1 1//2” are gently placed under the lower eyelids lengthwise. The volume of tear flow from the lachrymal gland is measured by how many milliliters of the paper strip are moistened in five minutes. Less than 5 milliliters is associated with a clinically significant decrease in tearing. Although topical anesthetics are not recommended for a Schrimer’s test, if you are given one before the test, be aware that your result will be lower than that from a test done without it.
In another Schirmer’s test, the doctor will insert a cotton swab into the nose to stimulate the lachrymal gland and repeat the test. It is very important at this stage to ascertain whether or not the lachrymal glands are producing any tears. If the doctor sees signs that your eyes have some tearing potential, she will make a note of that for treatment possibilities. The Schirmer test alone is not enough to diagnose KCS.
Rose Bengal or Fluorescein Test
Another test for tear quality is to check the fluourescence of rose bengal and fluorescein when they are applied to the eye. Rose Bengal and Fluourescence are vegetable dyes that are instilled into the eye to outline any dry spots on the eye surface. Both dyes are used to measure tear volume and outline the spots that have eroded because of dryness. Fluourescein spots correlate directly wit the amount of discomfort patients experience. Fluourescein is used to determine “tear breakup time” or how well your tears maintain their integrity. With your eyes open, your doctor will add the syre and take note of the time it takes for the tears to evaporate and to see dry spots on the cornea. Because it stings and can be irritating to dry eyes, rose bengal is now often replaced with fluourscein.
For more information about tests and their meanings, please refer to A Body out of Balance.
It is possible to suffer from Sjs and still have test readings in the normal range. In fact, many patients relate just that. But, as time goes on, test results change. A physician may suspect Sjögrens with normal test results but have nothing objective to go on. She may even say something like…... ” Your test results are normal but I suspect you’re suffering from … “ A patient with symptoms but otherwise normal readings would be wise to question the physician carefully about this possibility and what treatment protocol would be helpful to try for symptom relief. Thus, treatment options may be tried even if the diagnosis is presumptive or possible Sjs. At the testing stage, when a patient suffers from multiple symptoms, no possibility should be overlooked in order to reach the most accurate diagnosis.