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Back in November, some of you may remember that I wrote about a new diagnostic test for Sjögren's called Sjö. Read more here. What's unique about the test is that it uses newly discovered diagnostic markers which can detect Sjögren's earlier than the traditional antibody tests (SSA and SSB). Well due to my recent spate of eye problems, I've been spending lots of time getting to know my eye doctor and his fellow. I'm sure most of you are not surprised that I often use my doctors appointments not only as an opportunity to deal with my own health issues, but to also to bring up new Sjögren's research.
During one of these conversations, I mentioned the Sjö test. Well it turns out that my doctor's office is one of the earlier practices using it and is having significant success with it. They have diagnosed a number of patients who in their estimation would have needed a lip biopsy or it would have taken another couple years for them to develop Sjögren's antibodies.
Some were having what were considered "vague symptoms" of dryness, joint pain, fatigue, and the doctor thought to order it. The results came back positive in a number of cases. This even happened to one of the technicians who works at the ophthalmology practice--and she is now being treated for Sjögren's. Early diagnosis is extremely important as many studies have indicated to help reduce further complications of the disease.
Often times as an autoimmune disease patient, medical research and development seem slow. It can takes years, if it ever does at all, for the implications of a new discovery to actually make it to patients as a diagnostic tool or treatment. But this development is real progress in action. The test was just released in November and it's already helping patients. A perfect reason to feel hopeful as we reach the close of Sjögren's Awareness Month.
Often times as an autoimmune disease patient, medical research and development seem slow. It can takes years, if it ever does at all, for the implications of a new discovery to actually make it to patients as a diagnostic tool or treatment. But this development is real progress in action. The test was just released in November and it's already helping patients. A perfect reason to feel hopeful as we reach the close of Sjögren's Awareness Month.
Hello! Reading through these blogs has been very informative for me. Over the last month I have had two separate eye infections (swollen, red, busted vessels, gravel feeling with discharge) that last a couple days and taper off- not pink eye, bleeding angular cheilitis on both corners of my mouth, my nose is so dry I have scabs in it that bleed, swollen "lumps" along my jaw line (in the submandibular glad area) that radiate through my cheeks (one of which was larger than quarter sized). I now have "swimmers ear" that's causing distorted swelling to my cheek jaw which isn't allowing me to close my teeth together. An urgent care wrote me off as ear infection, an ER tried to until I got mad and they decided to actually feel how much swelling I was unhappy about and concluded I have parotitis too. All of this considered I can't help but to think there are some strong signs pointing to Sjögren's.
ReplyDeleteLong term wise I've questioned having an autoimmune disorder because at least once a year when I'm sick it's for 2 months and doctors can't really give me a reason. Over the last 3 years I have been consecutively and extensively sick March/April/May with no connecting symptoms (ranging from undiagnosed rashes that get infected, to flu symptoms and upper respiratory infections, to all the above). I am sick of allergies being the blanket statement for everything. I do have allergies and probably worse than others, but in my mind it doesn't mean it is the end all, be all of my health. I've had a million cases of sinusitis. Everything going on right now doesn't scream allergy related for me (not to mention I haven't had any drainage or sinus pain the whole time which is the first thing that would happen at home) but I keep hearing "everyone has allergy problems when they first move here". I moved to Florida from a Tennessee city that makes the top 10 for Worst US cities for allergies every year. I get that Florida has different things blooming, but it's honestly a walk in the park comparatively. Not to mention I feel so poorly I've been out of the apartment maybe a handful of times since the move. For years I would have a frustrating battle with stinging, watery eyes that left the corners of my eyes were chapped and still watery. I would proactively take zyrtec (and even take more than the recommended 10 mg at 20mgs max with no avail), and do allergy eye drops. All of this because I've always been told "allergies" but didn't phase anything. It dawned on me both of my parents have dry eyes and they have issues with excessive tearing because of it. I bought drops for dry eyes instead of allergy eyes and I saw such a difference. It actually stop tearing.
Sorry for the rant. I guess I'm at a point of feeling defeatist because I'm the only one that seems concerned about the amount of time I feel poorly. It will be 2 weeks before I can get to see someone in internal medicine. How do I approach questions about this condition and concerns to be tested? How do you make doctors listen?
Have you heard of Eagles Syndrome? Read up on it and see if you might have the symptoms!!! Be BLESSED!
DeleteDo labs for medical testing have this? Or is available only through Opthamologists?
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