Monday, January 11, 2010

Sjogren's Diagnosis - Your Results May Vary

I was recently asked by a reader to share my experiences with early Sjogren's syndrome symptoms and my route to diagnosis. She was frustrated: "Why should it take so long to figure out what's going on? Why don't doctors know more about Sjogren's? How were you diagnosed?"

She's not alone in her struggles to get a good answer for her health problems. According to the Sjogren's Syndrome Foundation, the average length of time for diagnosis for most Sjoggies is seven years.

Every Sjoggie has a different story to share, but here's how it all happened for me.

In the fall of 2002, life slowly seemed to change for me, and I just couldn't put my finger exactly on what was going wrong. I had a job that I loved, my family was happy and well, and I felt as though I should have been living large and feeling fine, but overall, I felt lousy. Constantly.

Initially, I chalked my problems up to my age and my pudgy waistline. I began to be more careful with my diet and made an attempt to get more exercise, but in spite of my efforts, I felt as though I was becoming more unwell as the months went on.

On an annual exam with my family doctor, I had brought along a lengthy laundry list of complaints, and bless her heart, Dr. H. pulled up a chair and reviewed each and every item on my list. My ears were constantly ringing, my eyes and mouth were dry, and my sense of smell had seemed to vanish. I was popping Tylenol and ibuprofen almost daily for aches and pains and the sensation that I was just on the edge of running a temperature. I had no energy to do anything but to go to work, then come home and collapse on the couch.

And I was cranky as all get out.

So she ordered lab work to screen for various problems and made a referral for me to see an ear-nose-and-throat doctor and an eye doctor.

The ENT physician could find no structural problems that would cause a decreased sense of smell or tinnitus (ringing in the ears). My eye doctor noted that yes, indeed, my eyes were dry. She prescribed some eye drops. My labs showed that my thyroid not producing enough thyroid hormones, and I had an elevated sedimentation rate, which indicated some kind of inflammatory process.

So I popped my Synthroid - replacement thyroid hormone - and tried every brand of eye drops that I could get my hands on for about six months. But in spite of continued discussions with Dr. H., I continued to feel as though I was slogging along through a giant bowl of jello, both physically and mentally. Routine tasks suddenly became difficult. I found myself checking and re-checking my work and second-guessing my decisions. My thought processes seemed to be slowed almost to a halt. I began to carry wads of kleenex in my pockets to mop my face since any small exertion left me sweating profusely and make up and mascara melted away. I knew these spells were not related to menopause since I had my ovaries and uterus removed several years previously and was already taking estrogen.

I began a very expensive relationship with my dentist after multiple cavities began appearing in my teeth at my gum line. My dentist thought that my dry mouth may be causing the cavities, prescribed fluoride mouthwash and gave me the classic oral hygiene lecture. I also began to appreciate nitrous oxide during these uncomfortable appointments. (You can read more about my lucky shoes and nitrous oxide escapades here. )

I was tired and miserable, and getting no answers.

Then one day, my director of nursing took me aside. "So what's going on with your face, Julia?" she asked.

Excuse me??

"Have you noticed that look as though you have the mumps? Here, look." She guided me to a nearby mirror.

Whoa! No, I hadn't noticed that my face was swollen, especially right in front of my ears. But by then I was too tired to notice if my shoes were on the wrong feet. Or if my hair was purple. I didn't really care.

"I want you to go home and get this checked out. Let me know what you find out - and feel better!"

I dragged myself home and called Dr. H yet again. Later, I sat across from her in the exam room and cried. "I feel so awful. I know that this isn't the mumps since I had a whopper case as a kid. What is going on?"

Dr. H. looked thoughtful. "I am going to have you seen by a rheumatologist. OK?"


"Because you might have an autoimmune disease called Sjogren's syndrome. Your enlarged parotid glands made me think of it. I'm not sure about this, but a rheumatologist will know what specific labs to draw and how to get a diagnosis."

What the heck is show - show - whatever you said syndrome? Never heard of it.

"Most people haven't. And I might be wrong, but let's check it out."

At my rheumatology appointment, Dr. S. explained that I did indeed have the classic symptoms of Sjs: dry eyes, dry mouth, enlarged parotids, fatigue, achey joints, and brain fog. Further labs showed that I had elevated c-reative proteins, positive ANA, and positive SSA/ro autoantibodies, all of which indicated that I had joined the Sjoggie club. She prescribed plaquenil and prednisone and so it all began......

It took about one year for me to get a diagnosis, and an additional three months before my medications began to take noticeable effect. And as every Sjoggie knows, a diagnosis does not translate to living happily ever after. The last seven years have been a rollercoaster ride of highs and lows.

So - what is so therapeutic about having a physician say these magic words, "Your diagnosis is...."?

It's relief that what is unknown is suddenly known. That you are not crazy, lazy, or a hypochondriac. A diagnosis doesn't make the symptoms of Sjogren's syndrome less difficult, but it does give them a legitimacy of sorts. The first time that I saw the words, "autoimmune fatigue due to Sjogren's syndrome" written in my chart I felt a very strange sort of satisfaction. Heck, yes. I am tired and sick and there IS a reason for it all.

So that's my story. What's yours?

Image found here.


Mary said...

I am that rare Sjogren's person, apparently, who was diagnosed right away. My eyes were killing me, but since I was on the computer nearly 24/7 for work, I assumed it was just eye strain. I went to the ophthalmologist, who immediately said she thought it was Sjogren's and zipped me off to assorted doctors. (Excitingly, in less than six months, one rheumatologist quit, one moved away, and one had a massive stroke...I do not have good luck with these people!)

I had a bunch of bad symptoms for a few years until I figured out how to take care of myself. Over the years (about 6 or 7 now?) I've found that if I use Restasis, take LOTS of fish oil every day (morning and evening), exercise, and keep my stress levels under control, I'm usually pretty much okay. Now I'm not having the terrible fatigue, the pain in my hands that made me cry, or the eyes that hurt so much I had to wear sunglasses everywhere I went! If I forget any of these things - particularly the fish oil! - it's usually a very short time until a flare rears its ugly head and I'm stuck in bed for a few days, feeling exhausted and miserable. I still have to avoid bright lights or I pay for it with a miserable headache, but that has been relatively easy to arrange.

So, yes, there is life after a diagnosis. But it involves spending your life spelling "Sjogren's" to everyone you know! :)

Anonymous said...

OMG, I didn't know it could take so long ! Seven years ? And it's only average ??
I was lucky, it take only three months to find out I have Sjogren, but the first year was awfull because my doctor was not so good finally, she had find the illness, but since "it was normal to feel pain when you have Sjogren" she didn't want to do anything against it.
Knowing what you have helps a lot, it means it not "in your head" or you are not "lazy". It's a "real" illness.

Now if anyone can find a cure, or a better lmeds....

Jenny P said...

Hi Julia,
You had to know I'd throw my two cents in:)

I never know how to answer how long it took to get my diagnosis...once I began in earnest searching for a real answer with the strongest of my symptoms kicking in, it was a matter of months. However, some (major) symptoms went back to 2 years old - 13 years before diagnosis. And when I was a kid, they ran PLENTY of tests that should have sent SOMEBODY in the right direction. But an unheard of disease? In a KID? Never.

Rather than hog your comment space, interest readers may want to see my post about my "Diagnosis Trail" here .

If I may, I just want to throw out there that one of the most important things in getting a diagnosis is to pursue 'mystery symptoms'! People discount them, but they are usual the tell-tale ones (I used to complain about my dry eyes from such a young age a classmate of mine told me that's what she remembers most!).

Julia Oleinik said...

Thanks for the comments, Mary and Jazzcat, so glad that you were diagnosed quickly!

Jenny, what a really insightful description of your diagnosis. I'll take your two cents any day...

Jen Mac said...

It took 13 years for me. I was just dx last week after a trip to the ER with lung inflammation making it hard to breath, I had a follow up with my NP who gave me prednisone which help greatly. Then a few days later, the familiar pain in my hands, finger, elbows, feet, ankles, toes, and knees kicked in. I have had flares like this for years and kept blaming it on chronic Lyme disease which I had in my 20's. Once you test positive for Lyme, you always test positive. So when I would complain about my pain to my docs, they would test me and up it showed. As an adopted child, I never knew my birth father's side and of course their medical conditions. At 36 I found my birth grandmother, called her and got a detailed list of the family's long history of autoimmune disorders. Lupus, Scleroderma, MS, Fibro, mouth ulcers, carpal tunnel, etc... they have it all. I made a rheumy appt, without a referral, without insurance coverage and asked to pay for every blood test possible. I think that helped since I usually got the least testing possible. Sjorgen's, RA, and borderline Lupus showed up. Got on Plaquenil. Now I'm just trying to figure it all out. Thank you for your blog, it has been so helpful :)

Lynne said...

My diagnosis did not come for seven years after the first signs of autoimmune disease that began in 2006. In 2008, I was diagnosed with kidney disease followed by HBP and prediabetes in 2011. It was a long and difficult road trying to convince my doctors that I was sick. Eventually, the disease took hold and my life came to a hault as I knew it. Even now, almost one year after diagnoses, I am still trying to convince my rheumatologist and primary doctor of how sick I am. Although I am happy to finally have a name for what is wrong with me I continue the fight to get proper treatment for this disease.

Thank you for your blog Julia. It has made such a difference in my life.

zuza1972 said...

Mary, I am wearing sunglasses 24/7 too, this way only I can exist during a day. Computers , fluorescent lights are killing me so if it wasn't for my Maui Jim sunglasses, I couldn't have been working.

Jayne said...

I am reading your blog with interest Julia. Have been diagnosed with orthostatic intolerance and adrenaline issues on account of joint hypermobility. But I have dry skin, dry eyes, sinus problems, fatigue and headaches from hell that I wake up with in the mornings (like I'm dehydrated). I'm going back to the rheumatologist tomorrow to see if we've ruled Sjogrens out - I know I've had blood tests but that it doesn't always show up. Something just does not make sense to me. It's driving me batty.

Sara Genta said...

Wrist pain started in 2017. Had to stop work as a foot care RN. Went on Medicaid, thank goodness. Some doctors treated me as if I were nuts, yes, or I would joke as if I were a Munchaussen patient. Eventually with a great ophthalmologist, OBGYN, new primary care doctor and a third slightly reluctant rheumatologist, I was diagnosed last month (2020). My blood work and lip biopsy were all negative - which was frustrating. (I had been sent to a pain program because I first was told I had fibromyalgia but could not tolerate the Anti cholenergic drying side effects of the medications.) I told the doctors almost two years ago I thought I should be tested for sjogrens - which of course was a journey.
I would like to meet other in Portland, Oregon.

Maria Magdalena said...

I am unsettled. I was diagnosed with Sjogren's 8 months ago on symptoms alone. I have NO abnormal inflammation labs and no antibodies. I do have confirmed Hashimotos going back 22 years. I was referred to a very old and rare Rheumatologist who was willing to diagnose me anyway. I have all of the symptoms, including periodic swelling and inflammation of the front (under the chin and tongue) salivary glands, and lacrimal gland.