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Thread: Everyone, Please give me some questions for the Sjogren's Conference

  1. #1
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    Question Everyone, Please give me some questions for the Sjogren's Conference

    To Everyone,
    I'm getting really excited about going to the Sjogren's conference with BonusMom next Thursday thru Saturday.
    I was randomly chosen to be on a discussion panel about living with SJS. There will also be a general Q & A session.
    I know that many of us at WHL have Sjogren's as an overlap disease. I think that many of us (and our docs) have just dismissed it as "just dry eyes and mouth". I've found that it can have many, many more symptoms. There will be experts there speaking about CNS and neuropathy in SJS, among other things.
    Since I'm serving on that panel, I would like to truly represent our online family.
    Please add your questions about Sjogren's to this thread for me. I'll print them out and take them with me. Then I'll report back with the answers that I get.
    Hugs to all,
    Marla

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    hi marla,

    i am completely embarrassed, but i also thought sjogren's was just dry eyes and mouth. i know that ignorance is no excuse, but i just don't know enough to ask an intelligent question. just please pass our appreciation on to the conference members. this is an emensely important topic, and thanks to them for providing this learning opportunity. i so look forward to learning from your valuable experience. congrats on being asked to serve on the panel.....they have made a wise appointment.
    Phyllis

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    OK everyone,
    Here are a couple of links to get you started to find out some info:
    http://www.sjogrensworld.org/index.html (check out the articles section)
    http://www.sjogrens.org/
    Both of these sites have some eye-opening information. It turns out that SJS is very close to SLE on the autoimmune spectrum, and they share a lot of symptoms. There are also a lot of shared symptoms with MS, as I found out. The neuro was "just sure" that I have MS, but the MRI proved him wrong. In my research, I found that this isn't uncommon with SJS patients.
    If SJS is one of your overlap issues, read this info, then please get back to me with any questions that you might think of!
    Hugs to all,
    Marla

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    why don't they run a test for Sjogren's at the eye doc or rheumy or pcp if a peron has a history of AI disease with symptoms that are shared by Sjogren's?
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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