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05/02/2013, 11:53 AM
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#1
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Posts: 232
Joined: 28-March 12
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so, after having a number of really scary blood test results, we are looking at a diagnosis of Sjogren's syndrome.
I need to have more blood work done as well as lung function tests, a cardiac echo and a CT scan of my chest and pelvis. I personally don't think I have it, but then I'm not a physician! I'd really like to hear from anyone else who has been diagnosed with this. thanks so much. This post has been edited by Exhaustedbuthappy: 05/02/2013, 12:01 PM |
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05/02/2013, 12:03 PM
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#2
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Posts: 294
Joined: 29-April 12
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Check out Venus Williams website.
She was diagnosed with Sjogren's Syndrome. |
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05/02/2013, 12:09 PM
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#3
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Posts: 1,015
Joined: 1-January 08
From: Canberra, ACT
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I am in the process of diagnosis, currently waiting on my final specialist appointment. Chances are good, and it is in my family. I also have a number of other autoimmune problems.
There is no direct treatment past treating the symptoms, such as eye drops and moisturiser. |
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05/02/2013, 01:22 PM
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#4
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Posts: 806
Joined: 31-May 12
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I don't have Sjorgren's, but I have SLE.
The thing about a lot of the autoimmune conditions is that they can be a bit unclear. It's not uncommon to have something that looks a bit like a couple of different conditions, and it can take a while to work out which of them it is. Then, when you get a diagnosis, you tend to find that the treatments address symptoms (e.g. anti-inflammatories, artificial tears) or try to suppress the overactive parts of the immune system (e.g. steroids). I kind of wonder why they bother distinguishing when the treatments are pretty similar whatever you have! I hope that you get some answers and feel better soon. |
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07/02/2013, 05:59 PM
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#5
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Posts: 38
Joined: 23-January 07
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HI, I have Sjogrens and SLE. My Sjogrens affects my salivery glands and my tear production. I have a really dry mouth and have tried the artifical saliva sprays (gross) but nothing really seems to improve it. The worst for me is at night and I constantly wake up with a dry mouth and have to have a sip of water. My eyes are always dry and gritty feeling so I use artificial tears regularly during the day. Again night time is the worst and I sometimes have to use the drops at night as well. I am on plaquenil tablets twice daily but I also don't feel these are doing much to help.
I have mild kidney, heart and lung problems but these are probably associated with my SLE, as is the arthritis Ive just started developing in my hands. I have had short courses of cortisone as well but this also hasn't made much difference. I was diagnosed in my late 20's when it was picked up during tests for infertility but I've really only had significant symptoms for the last 3-5yrs. I'm seeing my specialist in a couple of weeks and will probably need to go onto stronger medication but I'm not sure what one. If you have any questions, please feel free to PM me. |
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