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    Old 02-18-2014, 06:50 PM   #1
    confusedgrl
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    Smile A scared lurking newbie

    Hi everybody!!

    I have been lurking on this board for approx 6 weeks but have not posted anything until tonight. I was diagnosed with scleritis approx 6 weeks ago and since then have been doing a lot of research and have gotten myself pretty scared with what I have found. I was fortunate that the first time I went to the eye doctor there was a dr there who specializes in autoimmune diseases. I was treated with oral steroids and Ibuprofen which worked really well. In the meantime he had several labs done, a chest x-ray and a UA. I also was referred to a rheumatologist - which I haven't seen yet. I return tomorrow to get the results of my blood work. Yesterday my eye started getting really red again and today the horrible pain started again. UGH!!!

    For years I have had low grade fevers almost continuously, extreme fatigue at times, and all kinds of aches and pains. Approx 4-5 years ago when all of these weird symptoms started my PCP did some lab work and sent me to an infectious disease doctor. All of my lab work came back negative and the infectious disease dr found absolutely nothing wrong either. I continued to complain about the weird symptoms and eventually the doctor told me that he couldn't do anything more for me other than send me to a psychiatrist - what?!?! I knew I wasn't crazy and knew that I truly didn't feel well but decided not to bring it up anymore since my physician thought that it was all in my head.

    I know that nobody on here can tell me what I have or what I don't have but I'm really nervous about tomorrow and I know from reading a lot of posts on here that you all have been where I am. I have learned a lot from reading these boards - some has scared the crap out of me and some gave me some reassurance but I wanted to thank all of you who have shared your stories and experiences so that people like me have an idea of where we are heading.

     
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    Old 02-18-2014, 08:23 PM   #2
    VeeJ
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    Re: A scared lurking newbie

    Hi & welcome, I'm glad you decided to post. If I had scleritis, fever, fatigue, and pain, I'd be doing exactly what you're doing: eye specialist plus rheumatlogist. I think scleritis can occur "standalone" OR in conjuction with certain autoimmunes and other conditions. Given additional symptoms, I'd want to see a rheum, too.

    You say your lab work has come back negative. Well, I was told that, too, but what I didn't fathom was that my doctors hadn't ordered all appropriate tests. When additional autoimmune tests, special skin biopsies, etc. were done by new doctors, I was finally dx'ed with lupus. Something simliar happened to my sister, too. Her GP kept telling her that all her labs were fine, but he hadn't ever run thyroid labs. Six long years later, a new doctor ran the tests, and my poor sis was found to be horribly hypothyroid.

    If this is autoimmune, AI's can take time to figure out because, by nature, they flare & recede, so can take awhile to trap. But you're asking good questions and your doctors are casting a wide net, and that's a good path, truly. Hang tough. We're here any time you feel like talking. Send updates when you can, OK? Hugs, Vee

     
    Old 02-19-2014, 05:13 PM   #3
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    Re: A scared lurking newbie

    VeeJ,

    Thanks soooo much for taking the time to respond to my post. I went back to eye doctor today and he had all of my lab results that were done 2 weeks ago. The only ones that came back abnormal were ANA 1:40 fine speckled and my C-reactive protein was high at 4.7.

    CXR - WNL
    cANCA - negative
    pANCA - negative
    Rheumatoid factor - 10 (normal 0-14)
    UA - WNL
    Quantiferon - negative
    HLA-B27 - negative
    CCP Ab, IgG 2 (normal is 0-19)
    Sed rate 12 - normal 0-20

    I started back on prednisone today for my scleritis flare up and go back in 4 weeks. If it hasn't improved or returns after prednisone taper he wants to do an injection in my eye. YIKES!!!

    I will be going to see the rheumatologist because he feels with my symptoms and labs it could still be autoimmune - it seems like he ruled out a lot though.
    is there anything else that I should be requesting that they do? I don't know enough about autoimmune diseases to know if they are missing anything.

    Again - thanks for taking the time to read

     
    Old 02-19-2014, 05:57 PM   #4
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    Re: A scared lurking newbie

    Dear confused, many of us have been in the same boat, and eventually things got clearer, so with your next app't with rheum, more info might get obtained to shed some light on this. With your current labs and symptoms, I would say rheumatoid arthritis is probably not it, lupus is possible even though your ANA is very low +, ankylosing spondylitis is unlikely as is reactive arthritis (neg HLA B27), and there is no outright vasculilits, with neg ANCAs. It is possible for symptoms to precede lab evidence of what is wrong. In my case, I had symptoms of lupus for 10 years before my ANA finally turned +, and it was only at 1:40, which most Drs would ignore. I cried with relief that something had finally shown up, and after that my ANAs were at higher titers. So you do have a + ANA and elevated CRP, which is a start. I think a general check of urine, complete blood count, chemistry panel, anti-dsDNA and anti-Smith (specific to lupus) should be done. Then anti-phospholipid antibodies, often elevated in lupus, and complement levels (C3&4) which could be low, and anti-RNP would be helpful. If you are on any drugs that were started before these symptoms started, anti-histone and anti ssDNA could be run to make sure drug induced lupus isn't present. Until more shows up, you are likely to not be diagnosed with something specific, but getting an investigation and baseline tests now are important and can be built upon later. Chronic fevers without infection are almost always due to inflammatory conditions which are generally autoimmune in nature, so at least you have a general path to follow in looking for answers. Keep us posted please on your progress with rheum evaluation.

     
    Old 02-19-2014, 06:08 PM   #5
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    Re: A scared lurking newbie

    Thanks Ladybug!!!

    I appreciate the advice and have written down the labs you suggested to take with me to rheumatologist.

    I have had these weird symptoms for 5 years and my previous PCP wanted to refer me to psychiatrist. I was actually kind of relieved to be diagnosed with scleritis (which I realize is something really strange to be happy about). It was finally something that someone besides myself could see and no possible way i could be making that up in my head.

    Thanks again. I am learning alot from you guys on this board. It seems there are many knowledgable and kind people on this board!!

     
    Old 02-25-2014, 03:58 PM   #6
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    Re: A scared lurking newbie

    I'm still learning how to use the boards but hopefully you guys will see a new post on this thread. My rheumatologist office called me today and wanted me to get some more labs done today and to go in for head CT on Thursday. the labs she ordered are:

    Anti-DNA Antibody
    ENA II
    C3, blood
    ENA I
    C4, blood

    I had them drawn today but don't have an appt scheduled with her until 3/28/14. I have an appt with my eye dr on 3/10/14 and he should also get the results. Anyone have a clue what she is looking for? I looked them up on line and it seems the two things that keep coming up are Lupus and sjogrens. My current lab work is in a post above...

    I appreciate any help and information

     
    Old 02-25-2014, 06:39 PM   #7
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    Re: A scared lurking newbie

    These additional tests are all related to lupus, especially the dsDNA and ENAs. There is not a specific test for Sjogren's in this batch. Do you know why she ordered a CT scan of head? Do you get severe headaches?

     
    Old 02-25-2014, 08:11 PM   #8
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    Re: A scared lurking newbie

    Quote:
    Originally Posted by ladybud View Post
    These additional tests are all related to lupus, especially the dsDNA and ENAs. There is not a specific test for Sjogren's in this batch. Do you know why she ordered a CT scan of head? Do you get severe headaches?
    I have had occular migraines for quite a while and have been having really bad headaches the past 6 weeks. The receptionist from rheumatologist office called to let me know she had additional labs and had CT scheduled so I don't know what the reason was.

    I don't want to have an autoimmune disease but after 5 years of feeling like crap on a pretty much daily basis it will be nice to be able to give it a name and maybe people won't think I'm just crazy and it is all in my mind...

    Thanks for the reply Ladybud!!! I'm still very scared and confused but feel I am at least heading in the right direction now. Maybe my scleritis will be a blessing in disguise :-)

     
    Old 02-26-2014, 05:59 AM   #9
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    Re: A scared lurking newbie

    The CT scan was probably ordered to rule out a lesion or growth causing the headaches. This is often done but the headaches are most likely related to the autoimmune disease, as headaches, including migraines, are a common symptom particularly in lupus.

     
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