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Thread: no official diagnosis, going soon

  1. #1
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    Default no official diagnosis, going soon

    Long story short or not. My mom died of systemic in 2002. She was not diagnosed until 2 mos. before she died. Looking back we can see the signs. She always had extremely high blood pressure,thus horrible head aches. but about the last 5 yrs. of here life she would gain weight randomly then it would go away. She started to hate being in the sun. She slept all the time. had stomach issues and bowel problems. Never complained of any joint pain, her eyes became yellowish and blood shot. Her memory became decreasingly absent especially about 18 mos. before she died. We just didn't understand what was going on. Her dr. never even gave Lupus a thought. I found a picture of her eight years before her death and to my shock she had a butterfly rash! There's alot more I could write about her. But the bottom line is she died a horrible death. Dec. 2002 I went to get tested to see if I had it, blood test neg. although I'm not sure which Test I was given. Now some crazy things are going on with me. I'll keep you posted on my appt 4/22.

  2. #2
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    Hi skipette

    And welcome to the board...my mother died not ever knowing what was wrong with her. He doctor never even believed her. He just wrote her off as lonely and pestering him.

    When she died we demanded an autopsy. I gave that to my family doctor who also treats my sister. That's how we found out what happened to mom.

    My sister tested possitive. I tested negative. Then like you some weird stuff started to happen.

    I've had one possitive ANA test and one boarderline and two negative. It's a waiting game to get the proper readings.

    Good luck with your blood work. What sorts of things have been showing?

    Editing to say, I recently found out that my mother did know that she had lupus, I'm not sure why I was never told, but it is what it is.

  3. #3
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    Hi skipette7,

    I am sorry to hear about your mother....That must be so frustrating.

    Understand a negative ANA doesn't necesssarily mean that you do not have an autoimmune problem. For many of us it goes up and down.
    And now you are having some other things happining?

    What sort of things are happening? Are you going to a gp or have you gone to a Rheumotologist?

    Welcome to this forum...

    Karen
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Hi Skipette7,

    Did you get lost when the site went down for 2 plus weeks. I am hoping you have this thread marked so you will get an email alerting you...I am looking for you and wondering how you are.

    I am sorry you lost your Mum. Only if they had known, but it is so hard to diagnose. It mimics so many other diseases. It is so hard to see our Mum's succumb to a disease. My Mum died of cancer. Both can be such ravaging diseases. Hugs....

    How did your appointment go on April 22?

    I hope we see you again...

    Be well...
    Hugs,
    Oluwa

  5. #5
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    Hi Skipette,

    Welcome to our GREAT Cyber family.

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