Spotlight On: My Life With Sjogren's Syndrome
Published July 12, 2014
by Rachael O'Halloran
Disclaimer: This article is not to be considered medical advice. It is about my personal experience with Sjogren's Syndrome, my symptoms and medications. What is working for me medically doesn't apply to all patients with this disease. Please consult your medical care provider before taking any advice you read on the internet.
Sjogren's is pronounced as "SHOW-grins"
Some of you who follow awordlover on HubPages may have read her hub on Sjogren's Syndrome with its unique screening quiz, which I hope you'll check out. It is a useful tool for those who have mysterious symptoms and no diagnosis yet.
In the comments of her hub, I shared that I was diagnosed with Sjogren's Syndrome in 2008 and that I am managed pretty well with medication. Since my search took quite a few years with a lot of bumps along the way, I thought I'd share my experience with you.
My Sjogren's Is Not Your Sjogren's
By the time we are diagnosed with an autoimmune disease, we have picked up all kinds of medical and mental baggage. It often takes years to get a correct diagnosis. At least, it did for me. Some readers may be able to identify with that.
While it is not true for everyone, medical experts say that people who have one autoimmune disease will often contract another before their lives are over. So it is not unusual to have two or more autoimmune diseases cohabiting in your body at the same time.
I have a pretty specific treatment that works for me and it might not work for everyone else. I know it is tempting to compare because I did it too. I had to remind myself that not everyone with Sjogren's has every symptom on the list and that we all experience symptoms at different levels of intensity.
The Good News And The Bad News
If you have someone in your family with Sjogren's, you're at a higher risk of getting it.
If you have a first or second generation family member with an autoimmune disease, you are at a higher risk of getting some kind of autoimmune disease too, but not necessarily the same one as your relative.
The Sjogren's Syndrome Foundation says there are about 4 million Americans who have Sjogren's. It mostly affects women who are 40 or more years of age and are usually menopausal or post-menopausal. This number has not been updated since 2000 (14 years ago) so you can be sure it is much higher than that now. I think the age should also be lowered because I started out younger than 40 with symptoms.
If you already have your diagnosis, there is always more to learn about this insidious disease and how you can go about treating it with over the counter and prescription medications. It is one of those diseases that can change at the drop of a dime, or it can stay the same for years. It all depends on the person, their lifestyle, their medication plan and what else is going on with them medically.
I'll spare you the origins and history of this disease, who it is named for and all of that. You can find that on any other hub or webpage about Sjogren's because they all go into great detail. This article will address the process of getting my diagnosis and how I now treat my Sjogren's.
Researchers are learning more about Sjogren's all the time.
"Sjögren's syndrome is the main culprit behind dry, irritated eyes, mouth, throat, skin and nose. It is a painful condition that takes an average of 6.5 years to diagnose and can be difficult to treat. Georgia Health Sciences University researchers say learning more about how it develops should improve diagnosis and treatment."
--Georgia Health Sciences University November, 2011
Two Types of Sjogren's Syndrome
1. If you have Sjogren's and no another autoimmune disease, then you have what is called Primary Sjogren's Sydrome.
- Primary Sjogren's is more aggressive and can cause severe dysfunction in the salivary glands, stiffness and swelling, joint pain, rashes, fatigue, dry cough and vaginal dryness.
2. If you do have another autoimmune disease that was diagnosed before or after your Sjogren's, then you have what is called Secondary Sjogren's Syndrome. It doesn't matter which autoimmune disease came first; what matters is the fact that you have more than one.
- Secondary Sjogren's comes with less severe symptoms of dryness of mouth and eyes but it has to fight with other autoimmune symptoms in the body.
- When a patient has two or more autoimmune diseases, it is very difficult for a doctor to diagnose Sjogren's because the symptoms are masked to look like so many other diseases, delaying diagnosis confirmation.
The presence of other medical conditions determines how well a patient gets along with Sjogren's and with their treatment plan.
You don't have to have every symptom on the chart
How many symptoms do you have from the above Sjogren's Syndrome symptom list?
My General Health
Except for the 1990s when I was in the best of health due to being misdiagnosed a couple of times, I have always been pretty healthy. I've tried to take good care of myself, eat right, get plenty of exercise, and I've always drank lots of water.
Since 2009, most of the time I don't even think about having Sjogren's Syndrome. I don't give it a second thought, except for the couple of minutes I spend taking my medication or using eye drops each time. As soon as I'm done, it is out of my mind. I consider myself lucky that my symptoms are well taken care of with prescription and over the counter medication, exercise, diet, common sense and lots of rest.
I do wish I had been diagnosed sooner though, because it was a very rough road to get to diagnosis and treatment.
Looking back in hindsight, my symptoms were almost right out of the textbook, yet it took years to finally label my disease as Sjogren's. I was given several other diagnoses - Multiple Sclerosis, Lupus, Fibromyalgia - before I was definitely diagnosed with Primary Sjogren's Syndrome.
It was a wonder the doctors didn't kill me with all the medications they gave me for diseases I didn't have.
Have you been diagnosed with an autoimmune diseases?
Restasis vs Artificial Tears
Dry irritated eyes
A Lot Of Misdiagnosis Along The Way
In 1985, I met awordlover (Anne DiGeorge) when we both had our babies in the same Philadelphia hospital. I had just given birth to my last child at age 38. Anne was a little younger, in her early 30's and had her last baby as well. She already had Multiple Sclerosis by that time, for about ten years. Over the two day hospitalization, we complained to each other about how tired we always were and we laughed at our terrible memory and concentration problems.
When she saw me putting eye drops in my eyes many times during those two days, she questioned if I had seen any kind of specialist. I didn't recognize my dryness, fatigue and concentration problems as symptoms of any disease, except being a "dead on her feet Mom" of five kids.
She said it might actually be something more than "busy Mom syndrome." For almost ten years, I all but ignored my symptoms because of taking care of my family, moving around the United States, and running with my children to their activities.
1990 - Moving from Philadelphia to California
By 1990, my oldest son was 23 and my youngest was 5. Usually we rented a house whenever we moved because my husband worked as a consultant for special projects with the federal government. Most of his assignments didn't last more than five years so we moved a lot over the years.
But this time, after one year of renting, we bought a house in California because we loved it there. After everyone was acclimated to new schools and jobs, I went back to work as a nurse at a Los Angeles hospital, working three 12 hour shifts per weekend.
Our health insurance also drastically changed with the move from the East Coast to the West Coast. We'd always had to pay for our family's medical insurance with Aetna or Blue Cross because Joe wasn't directly employed by the US government and we didn't get the great benefits other government employees did.
When I went back to work in late 1990, my health insurance at the hospital was free. But it was also an HMO, something very new to us (and to the rest of the US), requiring referrals for tests and to go to specialists.
Although for years my symptoms were dry eyes, dry mouth and monster-sized mouth ulcers, it was never really much to run to doctors about. Over-the-counter eye drops, a bottle of liquid Anbesol for mouth ulcers and drinking a lot of fluids usually took care of symptoms. In no time at all after we bought our house, I was exhausted because of house hunting, juggling job and taking care of family that it aggravated my symptoms.
Remember me saying that except for the 1990s, I wasn't in the best of health? Actually, I wanted to forget the 1990s altogether.
In 1991, when I was 44, I had a "routine" hysterectomy because of fibroid tumors and I developed a blood clotting problem after surgery that my doctors didn't catch in time so that I had a very small stroke. My brain MRI showed some fuzzy gray spots, but physically I was very lucky because I didn't suffer any outward ill effects.
Menopause kicked in full storm a couple of days after the surgery. I had no idea hot flashes were that hot! I started hormone replacement therapy. I went back to work in three months only to find myself exhausted more than ever and blaming it on going back to work too soon.
I had fatigue and dry eye symptoms and I was having more than the usual type of memory issues - at work, at home, in the store ... everywhere. Actually, I just thought I was feeling my age especially when my joint stiffness worsened. My family doctor thought it was residual from the small stroke. I was in a fix; my old neurologist no longer took my HMO insurance, so I had to find one I liked from their provider list.
Each new neurologist consult repeated old tests and the doctors either gave no diagnosis or a radically different diagnosis from each other - from Lupus to Multiple Sclerosis to Wegener's Granulomatosis, or Fibromyaligia. After doing some research at the library (pre-internet days!), I didn't think any of them matched what was going on with me.
Each doctor put me on steroids for short periods, which took care of some of my symptoms but as soon as the prescription was gone, everything came back again. I was recognizing the signs with each new appointment ... these doctors thought I was a quack patient and that all my symptoms were in my head.
1992 - You Have Lupus
Finally in 1992 at age 45, a Neurologist and a Rheumatologist agreed on one diagnosis -they said my test results all pointed to SLE, Systemic Lupus Erythematosus - Lupus. I wasn't totally convinced because when I compared myself to others, I knew I didn't look like other patients who had Lupus.
On top of a high dose of oral steroids, I was prescribed immunosuppressive and anti-inflammatory medications. After a month, I was switched off prednisone to methotrexate (a stronger steroid) for the joint stiffness and other medications for fatigue and dryness symptoms. I also needed medications for the side effects of all the medications.
Methotrexate is nasty and even though it helped a little, after three years, I stopped taking it because not only had I gained 30 pounds (a side effect of steroids) but my white blood cell count was becoming suspiciously compromised because of the immunosuppressive drugs.
1995 - Michigan and You Have Multiple Sclerosis
In 1995, we moved again, this time to frigid Michigan. We put our California house up for rent because Joe and I thought it would be a good place to live once the last child was out on his own. We still had three living at home, so we rented a house in Michigan for Joe's five year assignment there.
Oh how I wished we had never moved from California. I got worse with the drastic change in weather - dry skin, dry eyes, dry mouth ... dry everything. Prescription eye drops weren't covered on my Michigan HMO and besides, I really didn't see much difference between them and over the counter Visine or Murine eye drops. I couldn't buy enough moisturizer to keep my skin from breaking down and how my joints ached with the cold.
When we got settled in our rented house, I pulled myself up by my bootstraps and applied for a job as a nurse in Detroit. With a new HMO health insurance a month later and my medical records forwarded, I was assigned new specialists who renewed my prescriptions for me. After a few years, either they dropped my plan or I got rid of them. With new neurologists and rheumatologists came new MRI's, spinal taps and blood studies to make sure they were treating me for the right disease.
I really "looked" terrible. In late 1999, added to my fatigue were symptoms of blurry vision, balance problems and occasional foot drop. My dry mouth caused even more swallowing problems and mouth sores than before. I couldn't trust my memory at work to remember simple two and three step duties. I passed off my vision problems as turning 48, holding reading material an arm's length away to be able to see it, and needing reading glasses.
After being treated for Lupus for more than seven years, two more "second opinion" specialists said I didn't have Lupus at all.
I had Multiple Sclerosis. They both said my brain MRI and spinal tap were conclusive. My ANA blood test was positive at 1:280 and the other blood studies jived in. I wanted to make sure they understood that I was told the fuzzy gray spots on my brain MRI were from a small stroke, but they were convinced the spots were from Multiple Sclerosis.
June 2000 - DMD's - Disease Modifying Drugs
In June of 2000, I began the daily injections of DMD's, which my HMO didn't cover. The monthly cost would have bankrupted a Rockefeller. For the first time in my life I had to ask for financial assistance to help pay the $11,000 a month price tag for the medication. My copay was $2,500 per month and the grant from the drug company took care of the rest.
I only got somewhat better on the medication, and I had to take a lot of other drugs for the side effects of the DMD's. My bloodwork was carefully monitored and the drug company and insurance required a lot of MRI's for documentation.
Besides the patients I had in my care, I only knew two people personally that had MS - a nursing co-worker named Jane from California and Anne DiGeorge in Philadelphia. One was confined to a wheelchair and the other one was fired from her job when she couldn't perform her duties any more.
Depression doesn't begin to describe my mental condition. I was 53 years old and worried about how long I'd continue to be employable.
Before (L) and After (R) Treatment For Dry Mouth (Sicca)
Glossary of My Former Autoimmune Medications & Side Effects
In no particular order:
Methotrexate - can be oral or injected. Nausea or vomiting and abnormalities in liver function tests; mouth sores, rash, diarrhea, and abnormalities in blood counts; lung problems, persistent cough or unexplained shortness of breath, slow hair loss, sensitivity of the skin to sunlight
Betaseron - Injected. Flu symptoms after injection, lessens over time; allergic reactions, depression, liver abnormalities, low white blood cells, injection site reactions. No known long term reactions.
Copaxone - Injected. Chest pain, injection site reaction, shortness of breath, palpitations, deep full body flushing (a big hot flash) lasting 15 to 30 minutes and then it passes without treatment. No known long term reactions.
Rebif - Injected. Gives flu symptoms which lessen over time. Injection site reactions, liver abnormalities, depression, allergic reactions, very low red and white blood cell counts.
From the website: (They tell you this at the very bottom of the page after they scared you to death with the side effects of each medication!)
- All of these medications have been shown to reduce the frequency of MS relapses and the development of new lesions. In individual clinical trials comparing a drug versus an inactive placebo treatment, MS attacks were reduced by 28–68 percent by different agents. In the clinical trials, most people were also found to have fewer, smaller, or no new lesions developing within their central nervous system as visible in MRI scans. Some of these medications have also been shown to delay the progression of disability.
October 2000 - The World Wide Web, Massachusetts and Delaware
In October of 2000, we moved from Troy Michigan to Boston Massachusetts and then something wonderful happened.
We got connected to the internet and my life just changed overnight. It is amazing how much the internet has impacted all of our lives now, but in 2000, it was just getting off the ground and becoming available in homes. There weren't thousands of websites yet, much less medical websites but I swear I couldn't stay off my second hand computer.
In November of 2000, I answered an online ad for clerical work on a medical website that turned out to be managed by Anne DiGeorge. I started to work for her part time doing research for medical queries sent to her via email, in addition to working weekends at a Boston hospital. During one of our first phone calls, I mentioned to Anne that I had been mistakenly diagnosed with Lupus in 1992, that it was changed to Multiple Sclerosis in 1995, then I told her what my symptoms were.
Because of her knowledge of autoimmune diseases and herself having Multiple Sclerosis, she said my list of symptoms and test results sure sounded like MS to her. So I stayed on the injections, even though I only felt marginally better. I was able to keep working, and thought maybe it was the drugs helping me to do that.
By June 2005, I had been on DMD drugs for five years. My DMD drug protocol had been changed many times - from Avonex to Betaseron to Copaxone to Rebif. It seemed that every time the drug reps pedaled a new drug to doctors offices, patients were changed over to the new drug. Although the cost was getting a little lower, they still were not affordable for the average person. With the special assistance from the drug company, in Boston I had a copay of $2,000 a month toward the $9,000 monthly bill.
In July 2005, we moved from Massachusetts to New Castle Delaware because Joe accepted a short three year assignment. It was one assignment that he would never complete. I was hired with the Dupont medical network in Wilmington, again with free HMO medical insurance.
The Day My World Changed
At 2AM on January 1, 2007, my husband was hit head on by a driver going in the wrong direction on the Interstate. Two other drivers were killed. Joe had a very severe spinal injury with crushed cervical and lumbar vertebrae and two broken legs. He was comatose and on a ventilator for nearly three months in Intensive Care. I was there night and day when I wasn't working. When he finally came around and was weaned off the ventilator, only then did doctors see the extent of his spinal damage. He was completely paralyzed on his right side, partially on his left side, and unable to speak or swallow even liquids.
In April 2007, my $500,000 HMO hospital benefits had run out and my $250,000 nursing home coverage took over so Joe could be accepted to one of the best spinal injury rehabs in the country in Morris Plains, New Jersey, almost 200 miles from our home in Delaware.
We were dependent on my one income and this rehab had $50 a day copay. I was still paying my medication copay of $2,000 a month. My Delaware HMO said after the $250,000 nursing home benefits ran out, if he remained an inpatient in New Jersey, we were on our own. Because of our income level, savings and retirement accounts, we didn't qualify for any financial assistance for the remainder of the huge medical bills. I was commuting from Delaware to New Jersey every day to be with Joe, still working my 36 hour weekends, working part time for Anne and trying to bring enough money in to keep up with the bills.
By October 2007, we ran through both our savings and retirement fund. I moved our belongings from Southern Delaware to a house rental in Northern New Jersey so I could make a shorter commute to the rehab center. I was able to get hired with a former employer in South Jersey and with my new HMO, all our benefits were reset so Joe could be taken care of without high medical bills. My four oldest children lived in California, Colorado and Michigan. I wanted nothing more than to pack up and go back to California when Joe got better.
2008 - New Jersey, Philadelphia and Sjogren's Syndrome
In January of 2008 my husband was discharged from rehab to come home to live with me in North Jersey. It had been just over a year since his accident. He still required a lot of care and got very frustrated very quickly. To say I was exhausted was an understatement. We still had one son living at home to help out and my HMO kicked in for home care benefits so Joe qualified for nursing assistants three days a week with our $10 a visit copay. Things were getting back to normal at home, but I was starting to come apart at the seams.
I was taking more power naps to address my fatigue in between running for appointments to an Ophthalmologist for dry, gritty eyes, an Ear, Nose and Throat doctor and a Speech Therapist because of my swallowing problems. I sucked on Peppermint Lifesavers a lot when I wasn't drowning my throat with gallons of water.
For someone who was always in good health, I sure was taking a lot of medication and going to a lot of doctors.
Living near Philadelphia, I saw Anne more often now and I still worked for her about 25 hours a week. When Anne and I got together for lunch one day, the look on her face confirmed to me how bad I looked to others. After listening to my schedule of appointments, she said I was defeating myself by doctor hopping because no one doctor got to see me when I was at my best - or at my worse. She said my symptoms were being addressed separately with consults instead of being viewed as part of a larger picture.
She said, "If you say you don't feel any better after all this time on the DMD meds, it doesn't take a brain surgeon to figure it out - it sounds like the diagnosis is wrong."
It was exactly what I had been thinking. I should have talked to her sooner, like way back in 2002 or 2003.
The Facts About Dry Eye
"It Looks Like Sjogren's"
She didn't think I had MS at all and said that what I had, looked like Sjogren's Syndrome. Although I had read about it in passing, I didn't have a lot of the symptoms listed on the charts and so I had dismissed it. I never brought it up to my doctors and they never mentioned it to me. They were too busy looking for all the "regular" diseases. But you know, after being told I had Lupus and then MS, her words weren't that hard to hear.
"But the fuzzy spots on my MRI, they insisted it was MS" I told her.
"Rache, your little CVA is probably where the brain lesions came from. Any doctor you go to now will say you have MS because they are looking at your records, not at you. I'm telling you, these guys look no further than the previous doctor's notes, consults, lab reports and your medication list."
I couldn't believe this. What if she was right? Could I be injecting all that poison in my body for all the wrong reasons?
Between rent, gasoline, copays for Joe's home care and the copay of the MS drugs that I probably didn't even need, I was really stressed financially. When it was time to refill my prescriptions at the end of the month, I convinced myself that I was doing the right thing when I told my neurologist I was going to stop the DMD's.
Okay, so it was a very bad idea, but once I was over the withdrawal part, I knew I would never take those injections again. After reading volumes of information Anne sent me in emails, I agreed with her. I was now 95% sure I had been misdiagnosed first with Lupus, and then with Multiple Sclerosis.
She suggested I change from a Neurologist to a micro-specialist called Rheumatologist-Neurologist, with a sub-specialty in Immunology. I soon learned it was a specialty that had very few doctors and none were listed on my HMO plan. She steered me to Thomas Jefferson Hospital in Philadelphia, and gave me one doctor's name to read up on before making an appointment. I had to be a self pay patient but I didn't care at that point. I needed a doctor who knew what he was doing.
2008 - Finally Finding The Right Doctors ... For Both Of Us
I gave my new doctor a copy of my medical records, including all the reports from previous doctors. He took his time going over everything and giving me a thorough exam. He shook his head, saying he was sorry that I had been at this for so long, going from doctor to doctor all over the country..
Of course he had to order his own tests, more MRI's, and blood work. After two visits, he said he was sure that I had Primary Sjogren's Syndrome, but he still wanted to do a few more tests to make sure I didn't have a second autoimmune disease. I didn't. He started me on medications and within a couple of weeks, I was doing very well.
2009 - Home To California
I loved my new doctor, but in 2009, we were to move again, this time back to our home in California. We gave the tenants living in our house 90 days notice so we could move back in around May. Joe was referred to a visiting German neurologist at Cedars Sinai Hospital in Los Angeles who had great surgical success with his particular spinal injury and agreed to evaluate him. All I had to do was get HMO insurance at a job there, our coverage would be reset and all Joe's care would be paid for again. There was no decision to be made, of course we would move. But I told Joe I wasn't going to California doctors and I wanted to fly back to make my appointments in Philadelphia. We traded off the expense of my old DMD monthly drugs for airfare!
Twenty years of dealing with symptoms
Since 2009, I have been flying back to Philadelphia twice a year for my specialist appointments. After twenty years of doctor shopping, I wasn't giving up this one for the world. Three of our children had moved to the various cities on the East Coast in 2011, so my doctor's appointments in Philadelphia became pleasure trips.
Since starting treatment for Sjogren's, I have had several tweaks of medication but I have to say, I'm doing pretty good. My symptoms are troublesome when I am not following the rules -- an almost gluten free diet, moderate exercise, medication and making time to rest when I need it.
I take Vitamin D3 to protect my bones from the steroids, Glucosamine Chondroitin for joint health, Vitamin A for vision and eye health, Nexium for GERDS, a Disease-Modifying Anti-Rheumatic Drugs (called DMARDs) named Plaquenil, an antidepressant named Prozac, quinine for restless limbs, Vitamin E for dry skin issues, Restasis drops several times a day for the eye grit problem, a monthly steroid infusion as needed and Bayer aspirin for occasional pain and joint discomfort. I stopped taking Rituxan infusions mostly because of the hype about the leukemia and lymphoma side effects.
My bloodwork is right on par now for any active woman of 67 years old. I still have Sjogren's. I just don't dwell on it. I haven't felt this good in years.
My husband met with his new specialist and had successful spinal surgery in December 2009, followed by nearly six months of outpatient rehab which gave him back some mobility. He uses two canes to get around and rests frequently. Since leaving the New Jersey rehab, he takes a special joy in letting people know his brain has always been fully intact and that he doesn't appreciate being treated like an idiot child.
Although he gets Social Security Disability, in 2011 Joe went back to work for three months or so. In May 2014, we decided to sell our house in California and move to Alexandria Virginia to be closer to our East Coast children and grandchildren. It was great timing because just when I decided I had worked long enough and to take my Social Security, Joe was asked to work on a special project in Virginia for a few months. We now split our time between Virginia and a little house we bought in a Florida retirement community.
Since 2009, things have been going very well. I have much to be thankful for.
Below is a list of tests that are typically done for Sjogren's Syndrome, although not all the tests are done for each patient. Doctors have their favorites and of course, a patient's symptoms determines which tests are needed.
How long to get diagnosis?
It sometimes takes going to a lot of doctors to get a diagnosis. How many doctors did you see before one said you had Sjogren's?
Sjogren's Means Daily Medication
Rose Bengal Test
In No Particular Order, Tests That Can Be Done For Sjogren's Syndrome
1. ANA - Antinuclear Antibodies Test
In most cases another blood test is done first called ELISA which stands for enzyme linked immunosorbent assay and looks for ANA's in the blood. Once found, the ANA test looks for "auto-antibodies" in the blood serum to detect autoimmune diseases for example: SLE - systemic lupus erythematousus, Sjogren's Syndrome, scleroderma, polymyositis, autoimmune hepatitis, psoriatic arthritis, Multiple Sclerosis, Rheumatoid Arthritis, cirrhosis, discoid lupus, juvenile arthritis, and some cancers.
This blood test is done to evaluate patients with signs of connective tissue disease ONLY when the Antinuclear Antibodies test (ANA) is positive, and especially if the patient has symptoms of Sjogren's Syndrome, Systemic Rheumatic Disease or Lupus Erythematosus.(LE)
- It takes about 1 day of laboratory time at the most for your doctor to get the results. It can be a stat order if necessary - usually ordered if a patient is in a flare up.
SS-A/Ro antibodies are mostly seen with connective tissue diseases including Sjogren's, childhood Lupus, neonatal Lupus, rheumatoid arthritis, and with congenital heart block in infants born to mothers with Lupus. This test measures the level of specific Sjogren's syndrome antibodies in the blood and is almost always Sjogren's when it comes out positive.
SS-B/La antibodies are usually seen in about 60 percent of patients with Sjogren's Syndrome and about 15 percent of those with Lupus Erythematosus (LE).
SS-B/La antibodies are usually not detected if there were no SS-A/Ro antibodies found.
- A positive result for SS-A/Ro or SS-B/La antibodies usually is indicative of connective tissue disease, including lupus erythematosus (LE), Sjogren's Syndrome, or rheumatoid arthritis.
3. Salivary gland biopsy
This is a biopsy of the minor salivary gland which is just under the inside of your bottom lip. Sometimes you'll feel them when you run your tongue inside your lip and feel little bumps there. The doctor numbs your bottom lip and makes a small incision on both sides. He takes a sampling of the glands and then sews up the incision. When I had mine, I was sore for a day or so, but that numbing didn't wear off for over a month. This test is for Sjogren's, sarcoidosis and lymphoma, and is best done when you are having symptoms so the doctor can get an idea from the results of how bad your disease is.
4. Schirmer's test
This test with a special dye is used for either dry eyes or very watery eyes to see whether your eyes make enough tears to keep them moist. A negative result here is considered a normal result. A score of 3 or higher is positive for Sjogren's. Most authorities agree that two out of three of the above tests must have a positive result to be Sjogren's Syndrome.
5. Fluorescent eye drop test
This is also a special dye test. The idea is to flush out the dye through the ducts in your nose in two minutes and if it takes longer, it is an abnormal test result.
6. Vitamin A Deficiency
This is a blood test looking for a cause of eye and vision difficulties.
7. Salivary Isotope Test (Parotid Gland Scintigraphy)
This is a nuclear medicine test where a radioactive tracer called technetium 99 is injected into your vein and you sit in front of a camera type scan so it can trace how much and how fast the isotope gets to your salivary glands (which are just under the jaw on both sides of your neck). This first scan is considered a baseline scan to measure against the next part.
About 30 to 45 minutes into the scan, you suck on a sourball or lemon candy so it can get your salivary glands to start watering. The technician takes another scan to compare it to the first part. A radiologist evaluates the results and usually within 24 hours your doctor has the report.
8. Rose Bengal Staining Test
This is an eye test done with a purple stain that looks for damaged epithelial cells as a reason for your lack of tears. Each eye is numbed with anesthetic, then one drop of one percent rose bengal solution is put in the corner of each eye in conjunctival sac. If your doctor thinks you have Conjunctivitis or Keratoconjunctivitis, this is a good diagnostic test. It is also part of the Sjogren's list because it can show the difference between them and Sjogren's. (Photo in sidebar).
If you are taking any kind of hormone therapy, your symptoms will be primarily inactive. Lack of estrogen, on the other hand, can make your symptoms look worse and can skew your test results greatly.
Links For Further Reading
- Questions and Answers About Sjogren's Syndrome
A good site with lots of information
- Sjogren's Syndrome Info
Sjogren's Syndrome- This autoimmune disease causes the body to attack the moisture-producing glands with symptoms that are mild to severe.
- Sjögren's syndrome - Wikipedia, the free encyclopedia
The history, symptoms, tests, diagnosis and treatment of Sjogren's.
- 13 Types of Sjogren's Fatigue
13 types of fatigue presented by the Sjögren’s Foundation
Sjogren's Syndrome Foundation, Inc.
6707 Democracy Blvd
Bethesda, MD 20817
American Autoimmune Related Diseases Association, Inc.
22100 Gratiot Ave.
Eastpointe, MI 48021
National Sjogren's Syndrome
Svedala, 233 23
Sjögren's Syndrome Association
3155 Rue Hochelaga, Suite 001
Quebec, H1W 1G4
Lupus Society of Alberta
Suite 200, 1301 - 8 St. SW
Calgary Alberta, T2R 1B7
Center for Peripheral Neuropathy
University of Chicago
5841 South Maryland Ave, MC 2030
Chicago, IL 60637
Autoimmune Information Network, Inc.
PO Box 4121
Brick, NJ 08723
European Society for Immunodeficiencies
1-3 rue de Chantepoulet
Geneva, CH 1211
Cogan's Contact Network
PO Box 145
Freehold, NJ 07728-0145
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© Rachael O'Halloran, July 12, 2014
© 2014 Rachael O'Halloran