You have all been so helpful with my foray into this world of Sjogren's. I have finally been able to get an appointment with a top rheumy at Columbia Presbyterian in NYC.
Today I picked up the results of some labs a local rheumy did. My ANA test was 1:1280. My question is, is that particularly high? Also it said it tested positive for a speckled pattern. Does any one know what that means? My oncologist who is part of a large healthcare group where my first rheumy is also part of, said he did not like the way the rheumy handled me at all. Her advice was to get shots in my painful wrists which is what orginally sent me to her, but to me that doesn't address the autoammune problem. In other words she just told me to find a hand surgeon - did not give me any names - and said that was all she could do for me. I guess I was just supposed to pick one out of the yellow pages. This has been very frustrating which I understand is par for the course, but I hope I'm on the right track now.
Not sure the scale used.
ANA: My immunologist say normal is <1:40. They quit counting after 1:2560 which is my count. Your count is above normal and shows your body is fighting something. No idea what speckled means.
Do you have a dr you do like and trust? My gp is great and I go with his recommendations. After one or two visits, you can usually tell if a dr "works" for you. My gp is actually smart enough or maybe humble enough to send me to someone else if something is above his general expertise.
We got the emergency care clinics here but I would not go to them unless it is something relatively simple or urgent. I went there once and was told it was allergies - ticked me & saw my OWN gp next day = upper respiratory infection. Geesh.
Good Luck!
The speckled pattern you mention is part of the test for ANA or Antinuclear antibodies which is used to diagnose more than just SJS...also used with lupus, scleroderma and mixed connective tissue disease and others. It uses a fluorescent technique and its interpretation is subjective. When ANA is positive it does not necessarily mean you have an autoimmune disease if it is in the lower ranges. When anti Ro/SSA and/or anti La/SSB antibodies are present in the blood serum the ANA test displays a "speckled" pattern in the cell nuclei. Anti Ro and La antibodies are indicative of SJS but that is not the only autoimmune disease they are found in so it is a tricky diagnosis.
You can find books on SJS that might answer your questions. I believe you can order them from this site or from the Sjogrens Foundation website.
The ANA test is a general test looking for autoimmunity and can be positive in a number of autoimmune conditions as well as the general population (although in the general population it is usually a low positive (under 1:160)).
different labs use different ranges for positive depending on the sensitivity of their particular lab equipment and technicians reading the test, but generally speaking 1:160 or higher will usually prompt a doctor to investigate further for autoimmune diseases. so yes, 1:1280 indicates something is going on to your doctor.
(I did read somewhere that cancer can sometimes cause a positive ANA though I don't know what levels, might be worth asking your rheumatologist and oncologist about if you have a cancer diagnosis).
The pattern can sometimes help rheumatologists figure out which autoimmune disease you are dealing with as they can present with similar symptoms initially. a speckled pattern is seen in Sjogrens, Lupus, thyroid disease among others so not very specific.
I would think some further investigation and monitoring would be indicated at the very least, depending on what other symptoms you have, if any of your other labs were off and what else you have going on medically. We aren't doctors here so can give medical advice, but I would be trying a different rheumy too, if all she said was find a hand surgeon.
Best of luck to you,
Nancy
My ANA is also greater than or equal to 1:1280 speckled. It's a measure of how many dilutions it took until the lab no longer detected any antibodies, and the speckled pattern is the most common. It is quite high, but that's not uncommon with connective tissue diseases. An ANA with that titer usually means there's a connective tissue disease (but not always).
I like this site to explain the tests they use for rheumatic diseases: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/laboratory-evaluation-rheumatic-diseases/
Thanks, Mishistory - that was an excellent website. It explained a lot, although there was a lot of technical stuff I didn't understand, it gave me some parameters to consider my testing and where it falls in the scope of things
Nancy60 - I have read that cancer can sometimes produce a postiive ANA test, but both my local onc and my onc from Johns Hopkins thinks it is too high to be a natural reaction to the cancer, plus I have this horrible wrist pain and corneal erosion that is not connected to cancer and I guess, in a way, I hoping it isn't from cancer. It may sound pathetic, but I am actually rooting for Sjogrens.