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Thread: I'm so complicated...

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    Default I'm so complicated...

    New rheum is awesome! So I've had a MRI of my head and no results reported to me yet. My quick urine/blood work is totally normal. She has given me yet another diagnosis, not undoing the weg's diagnosis but adding to it. What's good, is on the basis of what has come back so far, this is not a wegs issue. A new ENT that works with autoimmune issues with "lots" of weggies in his care, says that what he can see up my nose doesn't look remotely like wegs.

    A new diagnosis of Sjogren's has been added to the mix. This often occurs in conjunction with other autoimmune problems and basically dries out every part of your body that is supposed to be moist. My nose and sinuses are so horribly dry that they're crusting over in self defense which causes pain. It explains my severely dry eye on the wegs side. My horrible stomach problems are likely connected to it since my esophagus is overly dry and allowing the reflux to occur. My awful rib-breaking cough is also related with the dryness, and possibly not cough-variant asthma at all. I've been blaming much of the joint pain, cold hands, dry skin, and "girl problems" on aging, but made I made her giggle when I said that because I'm only 35.

    This rheum has connected random dots in a way that makes sense. I've got to wait on the MRI to rule out a wegs flare. Either way, it's going to go about the same way. Got prednisone on board right now and my new team (rheum, ENT, and eye doc) are going to figure out exactly how to treat this.

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    Hi LilyPony,
    I'm usually very sceptical when doctors come up with multiple diagnosis when dealing with Wegener's since it is capable of presenting in so many different forms. There is also the matter of statistics when someone is said to be suffering from more than one very rare disease. However, from what you have said (I have not even heard of Sjogren's ) they may be on to something. Let's hope so, since pinning a name on it is half the battle. Good luck with your treatment and hope the diagnosis can be confirmed.
    Jack

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    I agree with Jack. Also, Sjogren's can be as difficult to pin down as Wegs. Here's a good website for those interested. A quick look at the image with symptoms will show you how much Sjogren's overlaps with Wegs symptoms. If it were me, I'd high-tail it to a vasculitis center and get their diagnosis. A team of good local docs might be fine to treat Sjogren's, but personally I wouldn't trust that they have the skill to treat Wegs, a mix of Wegs and Sjogren's, or to differentiate between the two.

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    What Sangye says.

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    I agree with JanW!

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    Dang! I don't think I'd want either Sjörgen's or Wegener's (except that wegener's is easier to spell). Looks like both are equally as bad and not very treatable. Good luck on following through with the new diagnosis.

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    Hi!

    I did not know that other rheumatic disorders/diseases (i.e.,sjogren's) can occur with Wegener's.

    Does anyone know what other rheumatic disorders/diseases can occur/overlap with Wegener's?

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    I’m not sure if I’m a fan of online digital records. You get instant access to all your results but nobody is there to interpret them for you. I just had a message to call tomorrow afternoon after they have time to discuss these results along with those from tonight’s MRI of my head. All blood counts and other tests run were in stated normal range. Below are the results that were not normal. I had googled what they meant and all I’ve succeeded in doing was worrying myself about the possibility of lupus on top of wegs and possible sjogrens! None of these things seem to have any connection to wegeners except the sed rate, though it is only 1 above normal so not sure that it’s even clinically significant. ANCA remains negative, though doesn’t mean anything.

    Sooo… anybody have any insight into this? Really curious from your own experiences I any of your labs have come back like this.

    Antibodies –
    SN = neg
    RNP = positive
    RO = positive
    LA = positive

    Anti-DNA = 119 (<110 = neg, 111-120 = borderline, >120 = positive)

    C3 & C4 compliment = negative

    Sed rate 16

    ANA – positive
    ANA titer #1 = 1:2560 nucleolar
    ANA titer #2 = 1:640 speckled

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    The ANA has a high number of false (+) but I don't know about false titers. Those titers are pretty high. ANA also has a tendency to give a false (+) when other AI diseases are present.

    I also second what Sangye said above.

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