What is Sjogren's Syndrome? How To Tell If You Might Have It
If you think you have Sjogren's, this quiz might help you to evaluate
Written by Anne DiGeorge, March 2013
The following symptom evaluation and quiz is just to give you an idea of how to evaluate yourself so you can decide whether to ask your physician if you are a candidate for Sjogren's Syndrome or some other autoimmune disease.
Not all the listed symptoms are Sjogren's; some are for MS, Lupus, Rheumatoid Arthritis and a couple other autoimmune diseases.
The point of the evaluation is to show you how Sjogren's mimics other diseases. Multiple Sclerosis, Lupus, Fibromyalgia and Rheumatoid Arthritis are among the top four mimics and the diseases that doctors mostly zero in on.
Because Sjogren's attacks any or all systems of the body (called systemic disease), sometimes doctors can miss diagnosing someone with Sjogren's Syndrome. It can look like any number of other diseases. If you know what most of the symptoms are and if you have any of them, you can put your doctor that much closer to giving you an appropriate diagnosis and start treatment sooner.
Note: You do not have to have every symptom on the lists that follow to be considered for Sjogren's Syndrome. Where you see the target scores at the end of each section, these are the minimum number of symptoms that most physicians will use to rule in/out Sjogren's Syndrome. All I did was put the wording in everyday context to help you identify the symptoms more easily.
Example: sometimes just saying "dry eye" won't make you think of "a gritty feeling or like you have a speck of dust/dirt in your eye." Sometimes saying "reflux" won't make you consider "heartburn."
Read each category, write down which symptoms pertain to you, answer the quiz at the end, read your results.
1. Dry Eyes
If you eyes are dry, itchy and/or sometimes sting, you would probably go to see an opthamalogist or to your primary doctor. Sometimes it feels like a piece of dirt/dust/sand is in your eye.
But it might not be an eye problem at all. Or it could be a symptom of another disease.
Get a piece of paper, keep it handy, this is going to become your symptom list.
Write down all that apply.
- dry eyes
- using eye drops (Visine, Murine)
- itchy eyes
- stinging eyes
- decreased vision, vision changes (upping the numbers on reading glasses in short periods of time)
- feels like something is in eye
2. Throat and Salivary Systems
Target: 5 or more
- Your throat isn't exactly sore, but sometimes it burns.
- Swallowing is difficult and sometimes can make you choke.
- You need more fluids to be able to chew and/or swallow food because it doesn't feel wet enough.
- Sometimes food just smells bad when it really isn't bad at all.
- Sometimes foods smell excessively sweet or more potent, like new vanilla air freshener or warm brownies right from the oven.
- Your voice comes and goes - more goes than comes.
- You are hoarse and sometimes you squeak in mid-sentence or your voice will drop a register (level).
- You never know when your voice is going to give out in the middle of a conversation.
- Sucking on Hall's or other throat lozenges or drinking more fluids doesn't totally fix it, but it helps so that you might ignore bringing it to a doctor's attention on next visit.
- You might start getting cavities when you haven't had one in a long time.
- Your lips need moisturizing balm because they crack, even when it is not cold weather
- You are getting mouth sores (canker or cold sores)
- Your nose is dry, you notice less blowing or post nasal drip than previously.
- Your tongue is dry
- You have a history of bile duct blockages in liver.
- You have abnormal bilirubin blood test results (always get copies of labs to keep for your records)
Write down all that apply and all you can identify with. I've underlined some words so you don't have to write everything down on your list.
3. Overwhelming fatigue
- When you get so tired, you don't want to get out of bed or get dressed for the day
- You are not motivated to do even pleasurable activities
- You feel the need to drink an occasional energy drink.
- You kickstart with coffee, sometimes multiple cups
- You are not sleepy, just tired. (overwhelming fatigue)
- You are anemic (Vitamin B-12 and Vitamin D-3 blood test for true result).
Write down all that apply.
4. Memory and Concentration Problems
Target: at least 2
- Loss of concentration. You used to be able to do a crossword puzzle all the way through. You now do half of it and give up. Channel surfing (TV, radio).
- Memory loss. You sometimes get to the store and even though you have a mental list of all that you need, you forgot.
- You go to dial your home or office and you know the number like the back of your hand, but it escapes you right now.
- Word fishing, when you can't put a name to a person, place or thing
- BRAIN FOG, when your thoughts are going every which way, or when you draw a blank.
Write down all that apply.
5. Digestive System
Target: 4 or more
- You notice that you have acid reflux after many meals.
- Sometimes you get nauseous after eating or drinking, even if it is just water.
- Swollen glands in throat.
- Heartburn, even after drinking water
- Excessive gassiness, breaking wind, flatulence
- Gastritis attacks, bouts of pain followed by bowel movements, irregular or loose stools
- You suspect food poisoning when you get sick because you feel like you're gonna die
- Colon issues - constipation, high gas pain, suspect gluten intolerance
- Sensitive to many foods you could eat in the past but now make you sick
Write down all that apply.
6. Nervous and Muscular Systems
- Muscle weakness, maybe dropping things or losing grip on items
- Joint pain (any joint)
- Neuropathy (nerve pain as opposed to pain in the joints)
- Sore, aching feet (could be burning or just soreness)
- Tingling fingers, toes, feet and/or hands, tip of the nose or ears
Write down all that apply.
7. Respiratory System (Ears and Nose)
Target: at least 1
- Dry nose
- Bleeding or dried blood in nose, but not profuse, just when you blow it or when it is dry
- Sinus infections
- Less earwax and less nasal secretions
- Ear popping more often
Write down all that apply.
My "total" number of symptoms from the areas above is:
What the ranges mean
If you scored less than 10, it is not likely you have Sjogren's Syndrome. Yet. Keep an eye on the other symptom targets to see if any manifest themselves. Ask for ANA to be included in your next blood work appointment to rule out any other autoimmune diseases.
If you scored between 11 and 15, you should have blood work and an autoimmune workup to see if you have autoimmune markers.
If you scored between 16 and 20, suggest Sjogren's to your doctor for consideration. The smart patient goes forewarned and forearmed to the rheumatologist, so that when the doctor is busy looking for everything else, you can turn around and say, "Doctor, how about testing me for Sjogren's Syndrome?"
If you scored 21 or higher, insist that you want to be tested. If you are going to a neurologist, ask for a referral to a rheumatologist. Don't let your doctor overlook this and begin treatment for another autoimmune disease, unless he (and you) are reasonably sure this has been ruled out.
Even after it is ruled out, ask your doctor to retest you every year for at least five years because your body is ever-changing. What is not Sjogren's today, could be Sjogren's in a year or more from now.
A word to the wise:
If you doctor hop, you can expect it to take much longer to get a diagnosis because you will not have continuity of care. I'm all for changing doctors when you don't like one or if you think another might be more knowledgeable. But make sure at least "the test result parts" of your records go with you when you change doctors because even though new doctors will do their own tests, it helps to have previous test results to weigh against. If your levels were stable a year ago, and now they are not, that is important information for your doctor to know. He can only know that with access to your records.
The next section will discuss the symptom list and the testing.
Sicca - dry tongue and dry eyes
Body chart of Sjogren's symptoms
Primary and Secondary Symptoms
With doctors being so busy, having a large patient load, and missing the obvious because they are looking for underlying reasons for symptoms, patients have to be their own advocates. If you don't do your homework, you can expect to spend five years or more getting a diagnosis of Sjogren's Syndrome before you get appropriate treatment. Don't be afraid to speak up.
Here's a list that many doctors use to consider Sjogren's as a diagnosis. It is derived from a handout from the Sjogren's Syndrome Foundation that my doctor gave me.
PRIMARY AND SECONDARY SYMPTOMS:
These are the primary dead giveaways:
- dry mouth, dry lips, dry tongue
- dry eyes, lack of tears, feels like grit in the eye
These are secondary in addition to the primary symptoms listed.
- hoarseness, voice breaks when speaking
- vaginal dryness
- swollen glands (esp. parotid glands in throat)
- muscle and joint pain
- confusion, momentary or long term (rule out dementia)
- memory loss, fleeting or permanent
- difficulty concentrating,esp for 3 to 4 step tasks
- cavities in teeth, esp when you haven't had one in a long time.
- peripheral neuropathy in hands, feet, fingers, toes
- anemia, low B-12, low D-3, low red blood count
- abnormal levels for Sed rate and C-reactive protein (blood tests)
- low grade fevers
H-pylori, Gluten Intolerance and Sjogren's Syndrome
Results of a study for H-pylori in connection with Sjogren's Syndrome. Primarily women get Sjogren's Syndrome, usually after age 40, and during or after menopause.
If you suffer from gluten intolerance, heavy metal toxicity, other food sensitivities, or have been diagnosed with another autoimmune disease, the study has some interesting results and conclusions.
Testing for Sjogren's Syndrome
Since dryness can come from other medical conditions as well as side effects from certain medications, dryness is considered a criteria marker to consider in addition to other symptoms.
There is no one test for Sjogren's Syndrome.
There is no cure for Sjogren's Syndrome. But it can be managed with lifestyle changes and medication.
A Rheumatologist is the specialist you would consult for Sjogren's Syndrome, not necessarily a neurologist. If you happen to get a doctor who specializes in both neurology and rheumatology, DON'T LET HIM GO! He's a gem!
- Anti-Nuclear Antibody Test (ANA)
- Rheumatoid Factor (RF)
- SS-A (Ro) and SS-B (La)
- Erythrocyte Sedimentation Rate (ESR - "Sed Rate")
- Immunoglobulins (IGs)
Schirmer Test (measures if you produce tears)
Rose Bengal and Lissamine Green (eye drops with dye to look for dry spots)
If you have ever used Mirena as a contraceptive, or any silicone lined product in your body, please check out this link to a blogger who talks about how similar symptoms are. She has Silicone Immune Toxicity Syndrome.
Treatment for Sjogren's
Click this link for support groups for Connective Tissue disorders, Sjogren's, Polymyositis, Raynaud's phenomenon, Rheumatoid arthritis, Scleroderma, Systemic lupus erythematosus , Vasculitis and more.
If you have ONLY Sjogren's Syndrome and not any other autoimmune disease, University of Oklahoma is conducting studies to test effectiveness of new medications. There is a small monetary compensation to you for participating. An ophthalmologist, rheumatologist and oral medicine expert will perform specialized tests (they say they would cost you about $2600) which are yours to keep. Anyone who completes the study will receive nominal monetary compensation for participation.
Here is the information link: http://omrf.org/patient-studies/sjogrens-syndrome/
If you have Multiple Sclerosis or symptoms of ONLY Multiple Sclerosis, they are also conducting studies where you can get a lot of your tests done in short period of time as compared to going to your own neurologist. Here's the link for more info. http://omrf.org/patient-studies/multiple-sclerosis/
Fibromyalgia, Lupus, Rheumatoid Arthritis, Scleroderma, are also mentioned at omrf.org.
Tips in addition to treatment plans.
Here's a link to read about recent studies with rituximab (Rituxan) used to treat Sjogren's.
Don't use hair dryers more than you have to (dry skin, dry eyes, etc.).
Use a lubricating eye drop when you go to bed to help cut down on "morning crusty eye." Ask for Restasis eye drops if they are not offered to you.
Be alert for conjunctivitis - pink eye.
Adding flaxseed oil to your diet may help with overall dryness (skin, eyes, vaginal, etc.)
Using a cool mist humidifier to sleep with, can help keep body tissues moisturized so you don't wake up with dry mouth, cracked lips, or crusty eyes.
Use glycerin swabs to swab your mouth several times a day if you don't want to drink gallons of fluids (which causes you to take frequent bathroom breaks).
Always always keep something on your person for cracked lips (Avon Dew Kiss lip balm is a great moisturizer and doesn't have tons of wax in ingredients like other over the counter lip balms).
Invest in a neti-pot if you don't want to use saline based nasal sprays to keep nasal passages moistened.
Always use a vaginal lubricant before intercourse, before long vehicle rides where you will be sitting for a long time and whenever you are taking a course of antibiotics (all cause dryness).
Ask for Plaquenil to combat fatigue and joint pain.
There are prescription medications to stimulate the salivary glands. Only you and your doctor can determine if they are right for you. However, they should be considered when other options have failed or if dental caries become a problem. Above all, keep up with oral hygiene because there can be complications of the salivary glands that can lead to surgery or other diseases.
The Mediterranean diet is best, because it has minimal processed food, along with an exercise program.
Management of Sjogren's, Part 1
Management of Sjogren's Part 2
Strategies for success: A personal experience
Tennis Pro Venus Williams talks about her Sjogren's Syndrome
Diagnosis of one autoimmune disease often attracts more autoimmune diseases
Do you know anyone with Sjogren's Syndrome?
© Anne DiGeorge, March 2013
Updated 3/23/2014 by Rachael O'Halloran to replace video and broken links
© 2014 awordlover