Author Topic: Diagnosing Sjogren's Syndrome: An Introduction  (Read 19143 times)

Linda196

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Diagnosing Sjogren's Syndrome: An Introduction
« on: September 26, 2012, 02:53:08 PM »
To help in diagnosing Sjogren's syndrome, the doctor will first gather a detailed medical history, which includes asking questions about your:
 
  • general health
  • symptoms
  • family medical history
  • alcohol consumption
  • tobacco use
  • use of drugs or medications
.
 
The doctor will also do a complete physical exam to check for symptoms of Sjogren's syndrome.
 
You may have some tests, too. First, the doctor will want to check your eyes and mouth to see whether Sjogren's is causing your symptoms and to see how severe the problem is. Common eye and mouth tests used to diagnose Sjogren's syndrome include:
 
  • Schirmer test
  • staining
  • slit lamp exam
  • mouth exam
  • biopsy
.
 
Schirmer Test
This test measures tears to see how the lacrimal gland is working. It can be done in two ways. In Schirmer I, the doctor puts thin paper strips under the lower eyelids and measures the amount of wetness on the paper after five minutes. People with Sjogren's syndrome usually produce less than 8 millimeters of tears. The Schirmer II test is similar, but the doctor uses a cotton swab to stimulate a tear reflex inside the nose.

Staining
Staining with vital dyes (rose bengal or lissamine green) shows how much damage the dryness has done to the surface of the eye. The doctor puts a drop of a liquid containing a dye into the lower eyelid. These drops stain the surface of the eye, highlighting any areas of injury.
 
Slit Lamp Exam
A slit lamp exam shows how severe the dryness is and if the outside of the eye is inflamed. An ophthalmologist (eye specialist) uses magnifying equipment to carefully examine the eye.
 
Mouth Exam
The doctor will look in the mouth for signs of dryness and to see if any of the major salivary glands are swollen. Signs of dryness include:
 
  • dry, sticky mouth
  • cavities
  • thick saliva or none at all
  • smooth look to the tongue
  • redness in the mouth
  • dry, cracked lips
  • sores at the corners of the mouth
.
 
The doctor might also try to get a sample of saliva to see how much the glands are producing and to check its quality.

Biopsy
In order to help diagnose Sjogren's syndrome, the doctor may recommend a salivary gland biopsy of the lip. This test is the best way to find out if dry mouth is caused by Sjogren's syndrome. The doctor removes tiny, minor salivary glands from the inside of the lower lip and examines them under the microscope. If the glands contain lymphocytes in a particular pattern, the test is positive for Sjogren's syndrome.


Then the doctor may do other tests to see if Sjogren's syndrome is elsewhere in the body as well. These will be discussed in the next post.
« Last Edit: September 26, 2012, 06:11:56 PM by Linda196 »
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Linda196

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #1 on: September 26, 2012, 02:55:30 PM »
Other Tests Used for Diagnosing Sjogren's Syndrome
Because there are many causes of dry eyes and dry mouth, the doctor will take these other causes into account. Generally, you are considered to have Sjogren's if you have dry eyes, dry mouth, and a positive lip biopsy, but the doctor may decide to do additional tests to see if other parts of the body are affected. These tests may include:
 
  • blood tests
  • immunological tests
  • Xrays
  • urine tests.
 

Blood Tests
The doctor will take blood samples to check blood counts and blood sugar levels, and to see how the liver and kidneys are working.

Immunological Tests
These blood tests check for antibodies that are commonly found in the blood of people with Sjogren'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 Sjogren's.
  • Gamma globulins are antibodies that everyone has in their blood, but people with Sjogren's usually have too many of them.
  • Rheumatoid factor (RF) is found in the blood of people with rheumatoid arthritis, as well as in people with Sjogren's. Substances known as cryoglobulins may be detected; these indicate risk of lymphoma
  • Antibodies (ANAs) can indicate an autoimmune disorder, including Sjogren's, but is a non-specific finding and needs more investigation.
  • Sjogren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific antinuclear antibodies that are common in people with Sjogren's; however, you can have Sjogren's without having these ANAs.


X-Ray
Sjogren's can cause inflammation in the lungs, so the doctor may want to take a chest x-ray to check them.
 
Urinalysis
The doctor will probably test a sample of your urine to see how well the kidneys are working
« Last Edit: September 27, 2012, 05:19:50 AM by Linda196 »
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slccom

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #2 on: October 06, 2012, 11:53:54 PM »
This is fabulous! Thank you so much!
Sharon

Gayle

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #3 on: October 07, 2012, 08:41:03 AM »
Thanks so much for doing all this work!
Gayle

Linda196

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #4 on: October 10, 2012, 04:04:24 AM »
Noted, Kamie, and it's a good thing to remember that not all cases present in a straightforward manner, but this board is meant as a source of information as to what type of testing a person looking for diagnosis can expect...as a starting point. It can also be used to get input on specific results, what they mean and how they impact a diagnosis of Sjogren's.

Thanks all for the input and support, but maybe we can reserve this board for questions concerning the tests themselves, and concerns about results?
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Lspeed1983

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #5 on: October 13, 2012, 09:33:58 AM »
Interesting, I always thought most were diagnosed by blood work.  I guess it makes sense since dry mouth and eyes seem to be how most cases start.  On the other hand my symptoms started with joint pain and fatigue.  As a male who is only 29, I didn't even think for a second it was Sjogren's or even Lupus.  I thought lyme disease was to blame.

I was diagnosed just one month ago by a rheumy. I was referred to her from my primary due to a positive ANA of 1:320 (SS-A / SS-B; speckled pattern) and my symptoms. I had very severe fatigue and joint pain + itchy eyes. She ran new blood tests and found a positive SS-A of 4.7, but the ANA was negative this time. She said that she is almost certain I have Sjogren's and made it an official diagnosis.


SW

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #6 on: January 07, 2013, 08:23:56 AM »
Hi,
Thanks for the information, I am new to SS, clinical signs all there bloodwoork not yet showing I am told that can happen. In the midst of the SJS Dx I also suffered a TIA !!! A lot to take in, today is my first day back at work in 3 weeks..it is a journey. I wonder if others did not show in their blood at first, I have had all tests except the salivary ones, DDS and rhemotologist said that I had sever dry mouth

Is it necessary for salivary biopsy? I have started Planqenil about 3 weeks ago.
thanks 😊SW


dbaratta

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #7 on: January 07, 2013, 07:38:47 PM »
Hi:  I suffered for 5 years before the symptoms got so bad my ENT sent me to an infectious disease doctor who actually figured this out.  My own family doctor and staff treated me like I was just another neurotic complainer - which I wasn't.  I too am sero-negative - always have been.  I was diagnosed after a saliva (radiological) study and a lip biopsy were positive.  Unfortunately, I usually test negative to everything but a few times I actually had a very high ANA. So...sometimes there is a light at the end of the tunnel.  Just keep moving forward.  Eventually someone will believe you and treat you.  Best wishes.  Diane 
Primary Sjogren's, RA, Raynaud's, Hashimoto's

MaryBee7

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #8 on: January 08, 2013, 02:12:24 AM »
Thank you for this.  I may have asked this before (B.F.  brain fogged) ... how is it that you all know your ANA "patterns" etc   this wasn't explained to me by any doctors.  Should it have been?  This sounds like a silly question when I sit here to read before posting but.  I think you all have gotten used to me by now.   :o

Nancy60

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #9 on: February 07, 2013, 04:53:10 PM »
I asked for copies of my lab tests and the pattern and titer was listed on there, my doctor didn't mention the pattern at all either. 

It's important to get copies of any positive labwork for your own records in case you change doctors or go to other specialists that might need those results.
Nancy

Cryssann

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #10 on: March 12, 2013, 05:39:27 PM »
So you either have Ss-a and Ss-b or you dont? Or are they and low? And what is the tier thing? They called me to say my daughter is now at the lowest possible tier with an autoimmune. I am confused.lol

Crys

myjade84

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #11 on: June 26, 2013, 04:05:35 AM »
This is very informative. This would help us a lot.

Patr

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #12 on: July 07, 2013, 09:46:00 PM »
I have had lots of blood tests but they all show negative. However I have had very dry eyes, thickened saliva and sore glands in my neck for 6 months now. I also have a terrible pain in left upper abdomen which I am trying to control by diet. I don't know if it is pancreatitis or bowel related. Given that I have had other bowel issues I suspect the later. However my Doctors don't believe what I say and are convinced because of the blood tests that "there is nothing seriously wrong and you are imagining it." I wish there was a conclusive test!
I am so glad that you have provided this information. Thanks
58 years old, female, suspected Sjogrens.

Vera B

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Do we need a formal diagnosis
« Reply #13 on: August 18, 2013, 04:43:29 AM »
:-X

For years, I have run to the doctor with pain in various  "pipes"  only to be told ..there is no infection...and sent home.   Now the lungs have kicked in. No breath sounds, steroids for a week. 

I think docs treat all the symptoms one by one and don't connect the dots.  So I wonder.  WHAT is the upside and downside of having a formal diagnosis.
« Last Edit: August 18, 2013, 04:45:41 AM by Vera B »

pweidema

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Re: Diagnosing Sjogren's Syndrome: An Introduction
« Reply #14 on: August 20, 2013, 06:36:03 PM »
How does the new IMMCO test fit in to this, do you know?

I have tested positive in the past (ANA 640), but now test negative. My rheum wants me to have a lip biopsy, but I really don't want to do it...
64, female. Sjogren's dx 2012. Nickel allergy. Blepharitis.
Fish oil 3000mg, AHA, B complex, Paxil.  Gluten free.