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Thread: eye doctor used the "L" word!

  1. #1
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    Default eye doctor used the "L" word!

    My rhem called me yesterday and said that my bloodwork came back negative for lupus, even though I have the rash that has been there for 6 weeks now and my joints are hurting me like crazy, and have sores in my nose, and about 25 other things, when I went to see her she told me to get a eye exam even though I didn't think I had any problems with my eyes so I went today and had the exam, the doc noticed the rash on my face and asked what was going on I told him that my derm told me I had tumid lupus bit I have alot of other symptoms, then he did some tests on my eyes he told me I have severe dry eyes and put me on restasis, he told me my eyes are raw and I hardly make any tears,and I asked him what did he think caused this and he said he would bet money that I have sle, I told him my rhem just doesn't get it, as I was leaving he asked who my rhem was, I told him and as I walking out he told his secretary to get her on the phone he wanted to talk to her. The eye doctor gets it why doesn't the rhem?

  2. #2
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    Default

    Wow, that's something! I wonder if the eye doctor will get any results.

    Has anyone mentioned Sjogren's syndrome to you? If I am not mistaken the dry eyes could specifically be that. Sjogren's is another auto-immune disorder and it doesn't sound like it explains all of your symtoms (AND for the record, please know I am not a doctor and not trying to diagnose...). I just thought of it while reading your post and have read that many people have both lupus and sjogren's....Might be another "name" to ask your doctor about.

    Good luck, I hope you eye doctor gets the rheumy to rethink things.

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    I was thinking the same thing too, and I was just reading about it on here earlier! (I have to get checked for it twice a year) Heres a link to another discussion about it on here http://forum.wehavelupus.com/showthr...ogren-syndrome

    and here is a link to another page I was looking at on it http://www.niams.nih.gov/Health_Info...me/default.asp

    Hope thats kind of helpful. I know Sjogrens and lupus go hand and hand sometimes so if that is what is causing your eye problems it would make sense. I hope the eye doc knocked some sense into your rheumy and you start to make some progress with them! Good luck!
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  4. The Following 2 Users Say Thank You to ritzbit For This Useful Post:

    Gizmo (06-14-2011), Peridot20_Gem (06-15-2011)

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    Here's another excellent site about the symptoms that Sjogren's can cause: http://www.hopkins-arthritis.org/art...ms.html#sec4_j
    It's from John's Hopkins, so the docs might be a bit more likely to respect it.
    I'm one who has it - The SSAs and SSBs were consistently high in my bloodwork, and I even tested positive with a lip biopsy.
    The docs still like to dismiss it as "only dry eyes and dry mouth". If you read up on it, you'll find that it is so very much more than that.

    My ophthalmologist seems to have a much better handle on it than my rheumy, too. It's good that you have him on your side. Restasis helps a lot. It's pricey, so mine told me to use each little vial twice, instead of only once. Just push the cap back down on it and keep it cool and in the box. Some people even keep theirs in the fridge, and the cooling drops feel good.
    Good luck!
    Hugs,
    Marla

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  7. #5
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    Hi gkf,

    I am sorry for what your going through and these Rheumo's need a good looking at themselves, we're hearing such alot of this lately on the site where patients and member's are getting fobbed off by them.

    Well if your eyes are like that, i'd say there's a good chance of Sjogren's Disease and SLE and i hope you manage to find out soon but you do need to a ophthalmologist about your eyes and you've been given good links by Ritzbit and Marla.

    Please keep we updated incase you hear something soon. xxx

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