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  • Lupus - some of my millions of questions

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    Old 08-28-2014, 10:27 AM   #1
    Meredith80's Avatar
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    Meredith80 HB User
    Question Lupus - some of my millions of questions

    Hi everyone,
    In the past few months I personally have put together a puzzle of strange symptoms that lead me to wonder if I too had Lupus. Of course my first reaction to myself was there is no way you’ve officially gone mad. Then without saying a word on my own crazy conclusion I had a dr say they thought I had Lupus. They did perform some blood work but did not conclude that I officially had Lupus said it was ‘normal’. The symptoms that have shown are photosensitivity (not butterfly rash but a rash on my chest and arms and once a horseshoe shaped rash on my forearm that disappeared quickly), nose sore (but on the outside edge of my nostril), knee pain, excruciating foot pain, and most recently rib pain on left side towards my back that spread toward my spine causing me to become stuck on the floor from a level of pain I can’t describe with words and took my breath away. (I actually thought it was just normal back pain not lupus related but the skin on my rib was even tender to touch and those I know w back problems thought that was odd)
    I have a few questions that I was hoping some of you may be able to offer input on. The first is can photosensitivity come and go? Usually my first exposure to sun in spring brings about the worst rash. It seems (and I may be completely wrong but that as the summer progresses maybe bc I burn less the rash is more infrequent.) Also, can photosensitivity manifest in other ways? The Sunday before I developed that rib pain I did get sunburn on my back. I am wondering if the photosensitivity can cause a flare up in our joints or other organs without showing a sun rash.
    Also, Since my blood test did not result in an actual diagnosis… what is the next step? Do I start over with a new dr and see where they lead me?
    And finally Has anyone ever had itchy palms and hands? And can you have nose sores on the outside of your nose?
    Thank you so much for any answers you guys may have… I feel like I am going in circles and that those I try to speak to about this think I am crazy.

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    Old 08-29-2014, 06:06 AM   #2
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    angryt's Avatar
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    Re: Lupus - some of my millions of questions

    I hope you don't mind me answering. I'm not diagnoses yet, but I can speak from experience and lots of reading. Others with more experience will hopefully chip in.

    the photosensitivity that is worse in the spring reminded me other something I read. Poylmorphic light eruption. I get consistent photosensitivity, but I think at first it wasn't so extreme.

    photosensitivity in lupus does cause other non-skin reactions - it can worsen symtoms such as joint pain and fatigue, ulcers etc. I'm terrible after I've been in the sun, the joint pain is horrific, the nasal ulcers are very painful and it hurts to breathe, and I'm so tired and weak I struggle to make it up the stairs. repeated exposure makes me very sick indeed.

    My nasal ulcers are just inside the nostril on the bottom, but on the edge, very very painful. If the sore is big enough it can extend outside.

    As for the itchy soles...I think that's usually caused by the liver. Did you have a liver panel test?

    What tests did they run? ANA, which antibodies? there are several threads at the top about tests.

    Last edited by Administrator; 08-29-2014 at 06:29 AM.

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