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Old 06-07-2009, 06:35 AM
757jh 757jh is offline
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Join Date: Jun 2009
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10 yr Member
757jh 757jh is offline
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Join Date: Jun 2009
Posts: 1
10 yr Member
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Quote:
Originally Posted by Aliya View Post
Because I've had multiple normal SED Rate tests, should I figure I can rule out Sjogren's and other autoimmune conditions? Or should I get other tests done, and if so, what kinds, and what kind of doctor should I go to in order to get them done?
Aliya, you don't need a positive sed rate or CRP to be diagnosed with autoimmune.

Your primary care can screen. ANA (anti-nuclear antibody) would be the first test. S/he may be unwilling to do more than that. If that's positive, you should be referred to a rheumatologist for more specific testing. The rheumy could prescribe Plaquenil, which may help with dry eyes/nose/mouth etc.

My sed rate didn't become positive until 6 years after a positive ANA.

Your opthomologist should have done a Shirmer's test (strips to determine how much moisture in your eyes) and can do Rose bengal stain (determine if damage to cornea due to dry eyes) and other tests to screen for Sjogren's. It would be useful to bring this info to the rheumy on first visit.

If you are having dental problems - eg increased plaque, difficulty keeping teeth clean - be sure to tell dentist. Biotene rinse and toothpaste helps a great deal.

My second rheumy did a lip biopsy in his office, not enough material for a good test. My advice is to be choosy about this test, you don't want to have to have more than one. I've seen recommendations online that it not be done in the office.

It's a frustrating condition, all these specialists don't communicate well. If you want good care, insist on getting copies of all your tests and hand carry them to each doctor you see.

Hope this is helpful. Best of luck to you.

J
UCTD
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