Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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Can tests be wrong?

I have had positive ANA test...twice. But then "normal" people can have a positive ANA, so that doesnt necessarily mean anything. But what about an anti-SSA/Ro? My lab report came back also listing "Sjgren's Anti-SSA/Ro" as positive, as well as a high CRP, Sed Rate, IgA and IgG. So my official diagnosis from my doctor is that I have Sjgren's. But I don't agree. I don't have the dry eyes, or any of the other typical areas of dryness. Nor have I ever had swollen salivary glands. What I do have is debilitating widespread muscle pain and joint pain (especially in my knees, but without visible inflammation), a history of seizures, and anemia. Plus have ribs on the right side that tend to pop out of place (ouch!) especially if I twist wrong or have a bout of hard coughing (chemical smells, perfumes, scented shampoos, etc., bother me). I also have peripheral neuropathy, although no diabetes. My blood sugar is and has always been good, as has my cholesterol (with my LDLs in the low 40s and HDLs near 70). Normal blood pressure for me is 90s over 50sat my last drs visit it was 90/54, so the heart is not an issue. Sorry for such a long post, but I guess what Im really wanting to know is

is it possible to have a false positive anti-SSA/Ro? And if not, is it carved in stone for Sjgrens, or could it be something else entirely?

Replies

deleted_user
deleted_user

Hi Earthdog (I love that picture, is it your pup?)

Here is a site that has the diagnostic criteria for determining whether a person has primary or secondary Sjogren's. While it does allow for some physician discretion to make the final diagnosis, this should give you an idea of what the process involves--and whether you were evaluated on any, most or all of these points.

http://www.sjogrens.org/home/about-sjogrens-syndrome/healthcare-providers/diagnosis-criteria

It's funny though, I have the dry eyes with filaments, dry mouth with long history of dental caries, lifelong GI problems. I developed a rash that covered 80-90% of my body that confounded my dermatologist and allergist for five months. Saw a rheumatologist who drew labs. The results showed a normal sed rate and negative Rheum Factor, ANA, CCP IgG, t-IgG, t-IgA. BUT my SSA, SSB, IgE Total, and Functional Anti-FceR are off the charts. Based on my history, current complaints, a physical exam and my labs, the doctor said I did NOT have Sjogren's. He suggested I see a mental health professional.

I fired him. So don't be afraid to get a second opinion.
deleted_user
deleted_user

If somebody told me a while ago that I would have Sjogren's and that would result in dry eyes and dry mouth, I would have told them that I don't have dry mouth. The reason I didn't have dry mouth is because I'm always reaching for my water or pop all the time. I'm drinking non-stop. Once I realized this, I guess I had to admit that something else was wrong.

Your instincts are your best advice. Listen to them carefully and feel free to get a second opinion. It never hurts to find out more. I had my eye doctor review my test results and he helped me get diagnosed with the Sjogren's. His findings that my eyes were dry were included.

Take care.
deleted_user
deleted_user

Sjogren's can have so many varied symptoms; symptoms the mimic other diseases. It took seven years for me to get the correct diagnosis because a doctor finally took the time to go through my entire (very thick) file of seemingly random symptoms and ordered the correct blood tests. I was immediately referred to a rheumy, who has put me on a course of meds that are helping. I also have Fibromyalgia and some of your symptoms sound like they could be that. Did your doc recommend you see a rheumatologist? Are you on Plaquenil? Good luck and I hope you don't have Sjogren's; it can be very debilitating.
deleted_user
deleted_user

Definately get a second opinion,everyone deserves to know the truth. For me, I thought I only had dry mouth, it wasn't until t he Dr suggested I have sjogerns that I realised what dry my eyes might be feeling a little dry at times. After the diagnosis however, I'm sure my eyes are dry, as it drives me crazy when I read or watch tv. I guess I always thought I was just tired... anyway what I'm trying to say is that everyone is different, and we all feel things in different ways. I'm not a Dr so I wouldn't even try to guess if a fause possitive is possible, but getting a second opinion sounds like something you need to do for yourself since you are in doubt. Good Luck, and hope you get feeling better. :)
deleted_user
deleted_user

i have sjorens and i dont have any particular issues with dry eyes, mouth and swollen glands. I have the joint pain and fatigue and raynauds - i dont know what my results were as at the time i was diagnosed i was in a flare and finding it all too much to take in! but know i tested postitive for rheumatoid factor and anti-La and anti-ro things

The sjogrens was confirmed by my salivary tests and scans - I have minimal damage to my salivary gland so hoping its been caught early - When I think about it its been years since I cried - I got upset but my eyes just got puffy and sore - it clicked after diagnosis that its the quality of my tears and saliva has deteriorated.

i have eye drops but rarely use them and I am starting to have problems eating occasionally. everyone is different and if you are concerned get a second opinion
deleted_user
deleted_user

I went to the rheumatologist few months ago because my ANA was 1:320 and we wanted to rule out auto-immune diseases. I think he tested for celiac disease and maybe Sjogren's... I am not really sure. I did not think I had dry eyes then because my eyes always watered nd got teary, I did not back then that is a symtom of dry eye. 10 days ago I woke up with an abrasion in my eye and since then everything has been downhill. My eyes are very dry, I am on 3 different eye drops and the eye dr thinks I have Sjogren's, so I am going to the rheumy again tomorrow. My mouth is drying up too, I just never noticed it before.
I agree that muscle pain and joint pain can be fibromyalgia. Do you have tender spots? I've had fibro for over 16 years. And people with fibromyalgia are very sensitive to smells...Anyways, listen to your instincts and seek a second opinion.
deleted_user
deleted_user

I've had several friends with similar labs and no dry eyes or dry mouth. Those symptoms came later. One friend who is a retired MD was rather relaxed about dry mouth symptoms until it finally hit her. Now she is a believer that it is a major problem. There were at least four years after her diagnosis before that hit, so we think she was just lucky enough to have the lab work done before her Sjogren's was in full "bloom" so to speak.
deleted_user
deleted_user

I have the horrible muscle pain and joints hurt at times too-no swelling. My eyes are dry- mouth a little but have plenty of saliva. My hands feel like an 18 wheeler ran over them they hurt so bad sometimes. I don't have all the symptoms either but am positve for Sjogren's SS antibodies, +ANA and sometimes + for Lupus (has been normal the past 2 years tho). I swim to stay in shape since it is non weight bearing-I get really sore from swimming but am worse if I don't swim. It keeps my muscle strong so I don't fatigue as easily. I hope this helps. I'm a newby to this site. BJ
deleted_user
deleted_user

My joint and muscle pain came first. I have neuralgias, myalgias and neuopathies with permanant nerve damage. My dry mouth was one of my last complaints.because I too was drinking all the time. My ANA has always been negative, My SSa is negative, but my SSb is positive. I do have anti nuclear antibodies of my thyroid, swollen lymph nodes and a number of other things. I was diagnosed with Sjogrens and possible Lupus.
deleted_user
deleted_user

Only 0.1 - 0.5% of healthy peps have a positive anti-SS-A.

Did they give a score? Anything > 1 is positive.

If you score is 8+ it's 100% SjS, but even if it's >3 it's almost certain you have a condition. Most commonly SjS or SLE.
deleted_user
deleted_user

About eight years ago I had sore muscles and exhaustion. I thought it was the flu. Went to the doctor once and he said it was a virus. The second and third time he threw out fibro. No dry eye or dry mouth. Zoom forward four years and my eyes started drying out. As of six months ago the mouth started drying up. Tests for ANA were positive about 3 years ago. My SS Anti-SSA/Ro are negative, but was diagnosed with SS two months ago. The disease develops at different rates. Good luck
Colburn
Colburn

I hate to share this but I did not have dry eyes or mouth for over three years. I had fatigue, muscle pain, swelling in my legs and all kinds of weird neuro sensations some painful like nerve pain here and there. I have never been able to work since. It wasn't until I had a flare 10 months ago that my eyes got hit. I didn't have swollen salivary glands till then either.
I asked the same question when I tested pos for Sjogren's. I believe my rheumatologist said no.
deleted_user
deleted_user

Did you get tested for RA (rheumatoid arthritis)? That can give you the muscle and joint pain.

My sjogren symptoms at start were serious fatigue, neck pain, and just feeling bad. I had an extremely high RA but no symptoms of RA which suprised the doctors. I was first diagnosed with lupus, then it was changed to connective tissue disease, and then finally they pinpointed it to sjogrens. When I had my eye tested when I was in my 20's, they told me I had the dry eyes of a 50 year old. When I tested positive for ssa and ssb, that is when they finally decided for sure I had sjogrens. This was done at Georgetown Univ Medical center in DC. Since then I have gone to NIH and they put me through a series of tests and if you have 5 of the 7 things on the test, you are qualified at having sjogrens. I had more than 5 of them. So if you are anywhere around the bethesda, md area, you can apply to be qualified for sjogrens. Look it up on the NIH website if you are interested. But I have read, and NIH has confirmed that you need to have a certain amount of symptoms from a list of criteria to be confirmed to having sjogrens. Hope this is helpful.
deleted_user
deleted_user

Earthdog,
I also love your little jack russell. We have 4 of them :)
Earthdog
Earthdog

Hollysflan,
Glad to meet another JRT lover. :)

Update on my stats: Most recent ANA came back neg as did Anti-SSA/ro. Does this happen a lot with anti-ssa/ro? The flip-flopping between poss and neg, I mean. I know it does with ANA, but does it with Anti-SSA/RO as well? Insurance no longer covers orig rheumy, and new Rheumy says no Sjgren's (which I tend to agree with, as still no dry eyes or other Sjgren's symptoms), but said there was definitely some sort of connective tissue disorder going on, with fibro being secondary as SED rate and CRP were both still elevated. And later a visit to the geneticist who tells me I have Ehlers-Danlos Type-III. Uugh! With so many conflicting dx's, I don't know what course of action to take. I just want to quit hurting, or at least not hurt so much.