Sjogren’s: Hard to Say…Harder To Diagnose

 

July 23rd is World Sjogren’s Day. Since symptoms of Sjögren’s syndrome mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s syndrome. Patients need to remember to be pro-active in talking with their physicians about their symptoms and potential treatment options. For more information about Sjogren’s visit: http://www.sjogrens.org

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  • Tara

    I haven’t been officially diagnosed with Sjogrens yet but am being treated for it. I also have a rare disorder called Distal RTA. My doctor thinks I’ve been living with these for up to 9 years. I’ve started on autoimmune suppresents and I’m hoping they work so I can walk again! I’ve lost so much moisture in the joints of my left leg that I need a walker. The RTA causes my kidneys to retain acids instead of potassium & magnesium so my bones are weakened by that as well. As overwhelming as this is – I found out after being hospitalized for 11 days – its a relief to find out I’m not crazy or lazy or just depressed. There are actual medical reasons for my dry mouth, itcy eyes, leg pain and bad teeth. And theres some relief to be found! I’ve decided to start a blog about my story – just trying to decide on what to call it. I haven’t found any support groups in my area & the few online ones I found haven’t “approved” me yet. Anyone out there who reads this and wants to get in touch with me – please do!!

  • Lisa

    I have been sick for years, and just got a diagnoses. My nose has been permenatly damaged the center of my nose, I no long have the center piece between the two sides , I have had two ENT’s certian I was a cocaine user , and thats why my nose was messed up,lol. My mouth can be like the desert, my eyes i notice the least , but they burn alot , I have just found this site, it looks really good.

  • keri

    I have just had the WORST case of Dry eye and it’s brought me so much trouble and pain, my Eye Dr did a test to see if my glands are making ANY tears, and basically, NONE. So this week I just had blood drawn looking for Sjogrens, RA, and Lupus. (I didn’t think you could do a blood test for these things?) But I’m anxiously awaiting the results.

  • Dameeka Mobley

    I was diagnosed with sjogrens as a test to help determine if I had lupus or not and then everything showed up to be positive. And seven years later it really showed up on the test, my rheumy said it was the highest levels that she had seen.

  • Kelly

    Wow I can’t believe I’m the only one who commented here. Well here’s a Sjogren’s fact for everyone:

    Did you know that more than 4 million people have Sjogren’s? That’s more than those who have breast cancer in the United States.

    Source: http://m.examiner.com/examiner/pm_60935/contentdetail.htm?contentguid=xCAXuTVK

  • Kelly

    I was so very lucky. Our family doctor ordered bloodwork right away when I complained of severe joint & muscle pain. I put off seeing a rheumatologist until 3 months later. Within a month, the rheum had accurately diagnosed me with Sjogren’s – I had the salivary gland lip biopsy to confirm. I’m glad I didn’t have to go through 7 years of wondering!