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IC and Lupus, anyone else??

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  • IC and Lupus, anyone else??

    Does anyone else have this combo?? Really hope not but hoping someone can give me some advice. I am MISERABLE!!! Not only do I have the pain from my belly/bladder, but my whole body hurts. I go to Shands in a couple weeks for the Lupus because it has gone undiagnosed for over 5 years because of moronic drs (can you tell I don't like FL drs right now?) I have also had a total hysterectomy because of endo/cysts/tumor/adhesions and they thought that might also be causing the pain from the bladder. But I was just dx with IC in August??
    For the IC, I have had the bladder installations which were sooooo not worth the pain afterward, tried Elmiron but had bad side effects, tried Elavil but am allergic, currently taking Atarax?? at night, and Prelief with meals. But other than that just taking Vicodin basically by the handfuls to try to make it to Shands. HELP!!!

  • #2
    TracyDawn,

    I posted this question a couple of months ago because my mom has both IC and lupus, but there weren't many responses so I'm assuming there aren't a lot of people out there with both.

    Hope you're doing better soon,

    Alexa
    My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

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    • #3
      Thanks Alexa. Hope your mom is doing OK.

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      • #4
        I was just wandering if you had a positive ANA
        or negative ANA. I know a lot of doctors use this
        as a major factor in diagnosing Lupus.

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        • #5
          I would like to know about the ANA also, cuz I have all the symptoms of lupus, and have thought I had it for a long time now. My ANA was negative, so my doc will not consider any further investigation banghead Best of luck to you all grouphug
          Wishing you the best, today, tomorrow, and always! Sheri G

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          • #6
            I don't have lupus, but I have severe asthma. I was diagnosed last March. I have often wondered about the connection with IC and other auto-immune diseases. Asthma is an auto-immune disease. It seems to me lots of people with IC have other disease's. I also have C5-C7 arthritis and stenosis, TMJ and Mitral and aortic regurg.
            carly

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            • #7
              Tracy,
              Sorry to hear you are having so much trouble. Hopefully at Shand's they will have answers and solutions for you. You may want to check with your doctor for another pain medicine allows you to function, as vidoden makes people drowsy. A lot of people here are on neurontin, that helps to inhibit the sensation of the nerve endings. Let us know how the visit to Shand's goes.
              jax PS go noles!
              jax

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              • #8
                What symptoms are you having that are Lupus like? What are the symptoms? My Doc told me yesterday that she doesn't believe that their is a definitive test for Lupus. I was going to ask this question as well. My guess is that some of us probably have it, but it is just lumped in with fibro, etc.
                Im anxious to compare symptoms..
                Thanks for beating me to this post!

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                • #9
                  I tested positive for a lupus test, but my doctor said that I didn't have lupus. I'm not sure which test it was that I tested positive for. I moved and I have a new doctor who is going to review my medical records so I will ask him. I was tested for everything my doctors could think for after my stroke. I don't feel horrible, but my abdomen does get sore...like too many sit-ups if I do too much...and I'm tired all the time. I hope I don't have lupus; I have enough wrong with me. I just don't want to have it and not treat it.

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