How many people out there do not actually have a positive diagnosis for sjorgrens ? - I have communicated with people who are being treated but are not sure if they are positive.
Is it me or does that make no sense ?
Just before my diagnosis, I was so ill that I knew there was something wrong with me. I could not get off the couch or barely move because of joint, muscle and other pain.
On the other hand, I'd had years of dry eye which started with Lasik (of all things). The eyes got worse and a couple of years before diagnosis, my mouth began to dry up too. I'd also had other things like neuropathy. I KNEW I had Sjogrens and it was just to prove it to the docs. The first doc I went to said there was nothing wrong (they didn't run all the tests) and I told my doc to send me somewhere else. I went to a University hospital and was diagnosed by positive bloodwork two weeks later.
The first docs suggested a lip biopsy which I had done. They said it was negative, but all my other docs said it was positive. So there is a great disparity with docs interpretation of tests. B.S. as I call it. If my tests had not come back positive, I think my GP would have started treating me anyhow. I started with methotrexate and prednisone and started feeling better fairly soon after. They added Plaquenil a few months later. Whether I'd been diagnosed either way, I'd have felt better with the drugs because they were working. If you feel very ill, try to get a doc to treat you. If it's dry eye only, there is only so much one can do. But, the drugs will help with other symptoms.
PS. I would never have another lip biopsy. If the doc says so, it's negative. Another doc can say it's positive. Besides I have a permanently numb lower lip.
Lucy
If the biopsy is sent to a lab - does this not warrant an accurate reading -
Was your blood test positive -
I thought there was another test where they injected some type of dye
Hi Tim :)
My bloodwork was not positive for Sjogren's but was mild positive for lupus. The symptoms are far more like Sjogren's here and my rheumatologist dxd and treated accordingly. In the UK we don't have to justify stuff via insurance companies.
When Sjogren's discovered the Syndrome, there were no definitive tests for it. He did it simply by observation, which is the way doctors used to work. I don't know whether blood tests had even been invented for it when they discovered that anti-malarials helped to control the condition.
I know they used to treat thyroid patients with thyroid before blood tests had ever been invented specific to thyroid disease.
people can get too tied up with labs.
Take care - Scottie :)
I had a pretty fast diagnosis of Sjogrens. I was told that I may of had Lupus too, but they now say it is just Sjogrens.
Take Care!
Vicky
www.sjogrensandme.blogspot.com
There are too many diseases out there for someone to be labeled automatically - I did not even know I had dry eyes - I am convinced my eyes became dry because of years of abusing OTC eyes drops - my mouth was never dry until I went to the dentist and they mentioned it - so maybe physchologically the stress has caused my mouth to become more dry -
My blood test was negative - my first lip biopsy was inconclusive - I am going tomorrow for another one - At my ENT - the guy who performed surgery on me 10 years ago -
I need a definite diagnosis - that way I can rule out other things...
Generally, you are considered to have definite Sj?gren's if you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do additional tests to see whether other parts of the body are affected. These tests may include
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Routine blood tests--The doctor will take blood samples to check blood count and blood sugar level, and to see how the liver and kidneys are working.
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Immunological tests--These blood tests check for antibodies commonly found in the blood of people with Sj?gren's syndrome. For example:
Antithyroid antibodies are created when antibodies migrate out of the salivary glands into the thyroid gland. Antithyroid antibodies cause thyroiditis (inflammation of the thyroid), a common problem in people with Sj?gren's.
Immunoglobulins and gamma globulins are antibodies that everyone has in their blood, but people with Sj?gren's usually have too many of them.
Rheumatoid factors (RFs) are found in the blood of people with rheumatoid arthritis, as well as in people with Sj?gren's. Substances known as cryoglobulins may be detected; these indicate risk of lymphoma.
Similarly, the presence of antinuclear antibodies (ANAs) can indicate an autoimmune disorder, including Sj?gren's.
Sj?gren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific antinuclear antibodies common in people with Sj?gren's. However, you can have Sj?gren's without having these ANAs.
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Chest x ray--Sj?gren's can cause inflammation in the lungs, so the doctor may want to take an x ray to check them.
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Urinalysis--The doctor will probably test a sample of your urine to see how well the kidneys are working.
Hi Tim,
I'm in inconclusive/undiagnosed territory. My results thus far are:
--Positive ANA (1:320) with speckled pattern
--Negative SSA & SSB (the rest of the panel for lupus, etc was negative as well)
--Negative Rheumatoid Factor
--Elevated immunoglobulins, specifically IgM, with polyclonal gammopathy
--Inconclusive lip biopsy (one focus of lymphocytic and plasma cell infiltration)
These were done over the summer. I just had the ANA panel re-tested and don't know the results yet. I've never had the anti-thryoid antibody checked.
I'll be crossing my fingers for you that your second lip biopsy goes well.
Reenie
Well if I have the most of the symptoms and the various cures work, that's all I need to know. Still plan on following up if I ever hear back from Hopkins, it's been a week.
In the meantime have found effective treatment what seems to be working after 6+ months of agonizing recurring mouth sores. Have found hope and a quality of life I feared was gone forever.
Chico:
I am so glad for you! Forgive me if you have put this on another post, but what was the effective treatment that you found?
Sue
I am not sure if I have a positive dx, but I am being treated for SJS. My bloodwork is boarderline on all my ANA tests and my lip biopsy was inconclusive. I had severe muscle/joint pain and fatigue for the past couple of years and now have dry eyes and mouth. The treatment is working and I am feeling so much better that I am surprized that I was even able to work.
Sue Ann
I didn't realise my eyes were dry but I knew they stung and itched a lot. I knew my mouth was dry when I woke up in the morning. I knew my joints hurt and sometimes muscle and skin too. I knew I got 'knackered' a lot quicker than my friends did. I knew bringing up children was totally exhausting. I knew what living with depression and no kind of diagnoses was like. I knew something was wrong.
I was glad MS was ruled out. I was glad RA was ruled out. I was glad when cancer was ruled out.
I don't actually care that nothing was absolutely, definitively ruled in. The treatment I'm getting has made me feel better than I did.
Even with a definitive diagnoses all the unknowns and variables and individual foibles of the disease come up anyway. there are no certainties.
Take care - Scottie :)
Not sure what a definitive diagnosis would be. Every doctor I have now lists Sjogren's as the diagnosis on every piece of paper requiring it, but I have never had a lip biopsy. They also list auto-immune vestibulopathy as a separate condition, even though it may be a result of the Sjogren's. Over the years the rheumatologists I have seen (I'm on rheumy #5 now) have named a number of different AI conditions, depending on what the primary symptoms were at the time, and depending somewhat on bloodwork, which has also changed over time.
Every rheumy I've seen has also said that negative bloodwork does not necessarily mean no disease. And positive bloodwork does not necessarily mean you have the disease most often associated with that bloodwork. As my family doctor said, he treats patients, not diseases.
For me, the most important thing is being able to get up each morning and do something that day without a whole lot of pain and fatigue, and the various medications that have been prescribed have helped me in that. They don't fix everything, though. With or without a diagnosis they won't fix everything.
I guess I fall into the category of not personally needing to have a specific diagnosis. Although the rheumy puts down Sjogren's and vestibulopathy on the paper, he says essentially what I have is "an auto-immune assault on the body," and they are trying everything possible to alleviate it. Most important to me is that he cares and is trying his best.
Genko
To paraphrase Dr. Gene Watson, who is an expert in Sjogren's "the method we use to diagnose Sjogren's sucks" (yeah, he said "sucks", I'll swear to it in court). He is looking into "marker proteins" in saliva as a way to diagnose Sjogrens.
Sue
I was test neg for every test out there time after time after time; yet I have severe dry eye and had plugs put in both lower eyes last year. I also take evoxac because my mouth was so dry i have difficulty swallowing, and I take omeprazole for GERD, and now have asthma, and use two different inhalers. My dry skin is horrid and am using hydrocortisone lotion. I finely asked the doc if he could honestly tell me I did not have sjogren's based on the symptoms and meds I was taking. It was then I was put on methotrexate; with no real expectations for any results. The improvement was nothing less than incredible; in one week the swelling in my fingers was already decreasing, and I move my finger with very little pain. I was given a positive diagnosis after that, doc said there is always more than one test for a positive diagnosis.
Collie
If the biopsy is sent to a lab - does this not warrant an accurate reading -
NOT NECESSARILY. DIFFERENT LABS HAVE DIFFERENT STANDARDS. ALSO DIFFERENT CRITERIA FOR POS/NEG.
Was your blood test positive -
MY BLOOD TESTS WERE POSITIVE.
I thought there was another test where they injected some type of dye
NOT THAT I KNOW OF.
Lucy
Just came back from second biopsy - so its in the books - should know results next wed -
Regardless - I believe that stress, anxiety and depression cause all of these illnesses -