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Sjögren's Syndrome Message Board
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Old 07-08-2012, 12:42 AM   #1
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Unhappy Is it Sjogren's? 25 yo female...

Hello everyone,

I have not been evaluated for Sjogren's yet, but I am thinking about being tested. Ever since I can remember, I've had the craziest dry skin everywhere on my body. I'm talking chronic flaky skin, especially on my arms and legs. More recently (in the last 3-4 years) my eyes have become very dry. At first I thought it was allergies, but now I'm thinking it might be Sjogren's. My mouth is also semi-dry, and sometimes when I swallow food I feel like it gets 'stuck' halfway down my esophagus and I need to take a drink of water to get it down. I don't really have coughing problems, but I do have a very dry nose which has been giving me daily nosebleeds (not a rush of blood, just when I blow my nose blood-crusts come out and it bleeds just a little--both nostrils). I don't know if this is related, but sometimes I do also get night sweats. My question is, can I have these kinds of symptoms this early? I'm 25, and I've heard that most people are diagnosed when older, but my dry skin has been around since I was a child. Also, I do not have joint or muscle pain...just extreme fatigue that I have always attributed to my chronic depression. I have felt 'sick' for years now, but the Dr.'s have just sent me away with antidepressants or brushed my symptoms off as me just being a hypochondriac. What kind of testing do I have to do to know if this may be Sjogren's? Is it a simple blood test? What does the 'lip biopsy' entail? I'm scared, and the more I think of the symptoms the more I think this may be it...my grandmother has had arthritis, coughing spells, and a number of the other symptoms, but I don't know if this disease is genetic or not. Please, any information would be great. Thank you!

 
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Old 07-08-2012, 07:05 PM   #2
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Re: Is it Sjogren's? 25 yo female...

It sure sounds like you have many of the symptoms that go along with Sjogrens. If you have done some research and reading, you probably know that it is often hard to distinguish Sjogrens from other autoimmune diseases. And frequently people have more than one of the autoimmune diseases. My personal advice would be to find a good rheumatologist and let the testing begin. There is not just one simple blood test that will give you the answer. Most doctors will do a battery of blood work. But that doesn't always give you answers either. Many of us are what they call sero-negative. The salivary gland biopsy (lip biopsy) is just one more test to help nail down a diagnosis. It involves a small incision in the lower lip to remove a few tiny salivary glands for testing. You want to try to find doctors in your area that are very familiar with Sjogrens. I am waiting for my lip biopsy appointment, even though I am sero-negative; my primary doc, rheumatologist, and the salivary doc all believe that I do have Sjogrens even before doing the biopsy. All of this is from my own research and experience... and there are probably others on this board who know a lot more than I do. From what I know, there is not a "one size fits all" description for Sjogrens. I am aware of 4 other people who have the Sjogrens diagnosis, and all of us have somewhat different symptoms. Best wishes. Please share your experience here if you do proceed with testing.

 
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Old 07-08-2012, 09:15 PM   #3
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Re: Is it Sjogren's? 25 yo female...

Thanks for the reply, texasmary.

I always thought that in most autoimmune diseases that there would be some form of pain, especially in the joints? I have never had joint pain...although my joints do snap and pop during the course of normal movement (my hips make a weird--and loud--'snapping' sound if I extend them a certain way and my toes crackle when I walk). I have an appointment with an internal medicine doc on the 25th of this month, so I will ask her about my symptoms and see what she suggests. I also have an allergy appointment this month, so I will see what they think about the dry eyes/bloody noses/dry mouth too.

I will keep you posted.

 
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