Ok guys, I have the doctor on Tuesday. She has done all my bloodtests (all negative) and doesn't believe I have sjogrens even though I scored a 2 on the schirmer test. I am here on the internet looking for research and info that explains that Sjogrens does not always show up on Blood tests. If you have any links you could send me I would be very greatful as I will take them all with me on Tuesday. Thanks so much
Gem
Howdy, gem.j. I would peruse the previous posts here on the forum. Also look at the articles available on the Sjogren's foundation web site. Make copies of the information and give them to your doctor.
What you are going through with your doctor is not surprising. Many of us here have sjogren's, but our blood tests show every thing is normal. If all else fails, you may want to request a lip biopsy. I hope you will get your answers soon.
Seeker
I'd go with the lip biopsy if I were you. Actually I was you many years ago...with negative blood work and positive schirmer's test and the lip biopsy gave me the conclusive diagnosis.
I know many opinions on the lip biopsy are expressed here. Remember to look at what Sjogren's really is...an "autoimmune" disease. That means lymphocytes (and other antibodies) that are in your body to attack disease are actually attacking normal tissue. The lip biopsy looks for those specific antibodies in your salivary glands. So if you have Sjogren's, then lymphocytes (along with histiocytes and plasma cells) will be present. This is exactly how the lip biopsy is graded as well...it counts the number of these antibodies that have infiltrated a specific area (4mm sq) of the salivary gland. Lots of people here will say it's not a conclusive test, but frankly, if you can see (or not see) the actual antibodies that are involved with this disease process, then I don't know how you dispute it.
You just need to find someone experienced in performing the test and make sure it's being sent to a pathologist that is likewise experienced in reading and grading it properly.
Seronegativity for Dummies: A Lesson in Seronegative Blood Results:
http://chroniccurve.tumblr.com/post/15295991395/seronegativity-for-dummies-a-lesson-in-seronegative
An explanation of how they diagnose Seronegative Sjogren?s:
http://www.medhelp.org/posts/Multiple-Sclerosis/Sjogrens-test-for-antibodies--Negative/show/531518
How is Sjogrens Diagnosed?:
http://www.sjogrenssyndromesupport.org/forum/topics/how-is-sjogrens-diagnosed?xg_source=activity
Im in the same position luckily my rheumy and internist are going by my symptoms and not blood work. They did told me that in the future I will need a lip biopsy if I ever need strong medications and need to fight insurance. For now they give me everything I need plaquenil, evoxac, restasis
Cindy, sounds like you are pretty well set with those meds. Hopefully, they will never ask you to have a lip biopsy.
Hi :)
The most important thing you can get your doc to do is to treat your symptoms. If he says you don't have Sjogren's say "Fine" (even if its not) and then ask "So what can you do for the dry eyes etc etc etc etc etc (list your symptoms)"
Take care - Scottie :)
For what it's worth, I agreed to have a lip biopsy as part of a collecting of tissue samples for an international study on Sjogren's nine years after being diagnosed first based on the Shirmer test and then corroborated with blood work. My lip biopsy was negative. Based on all of the other tissues and tests done at the time of the study, the conclusion was still that I have Sjogren's, but if it had been based solely on the lip biopsy, my diagnosis would have been turned around.
As everyone has said, tho, the important thing is that your doctor take your symptoms seriously and treat them appropriately. Having a definitive diagnosis is a really good thing to have (made me finally realize I wasn't crazy. But having your symptoms under control and feeling the best you can is just as important. If this doctor can't do that for you, it's time to fire him or her and find someone who will!
Best of luck to you,
Tracy
My blood work does not show sjogren's either. Do I really care? Not at all. As long as the doctors are willing to treat the symptoms, all is fine in my world. My medical record does show Sjogren's though. I have enough of the symptoms that I guess I don't need the blood work to show it. I don't want the lip biopsy.
Treat the symptoms.
Lighthouse,
Thank you for posting your links. I love the Seronegativity for Dummies article. The explanation is one of the best that I have read. I am working with some folks
here in the Pittsburgh area to start a Sjogren's Support Group. I will definitely save this explanation for a handout. I also think it is a good one for family and friends
who don't "get it". We SeroNegative Sjoggies should keep that article handy & whip it out when we encounter people who are a bit misguided when it comes to how "sick" we don't look.
Thanks for sharing!
SjoDry
Thankyou all so much. I will be taking this thread to my doctor.