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Thread: New to the forum

  1. #1
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    Default New to the forum

    Hi everyone,

    My name is Margie and it's by googling I found this forum and it's a relief to find a forum where I can read more about Lupus.

    I'm trying to understand Lupus and the impact it had on my life is horrible.

    I had a major flare and the speicalist who was treating me for Lupus, did accepted a job as the director of an hospital and doesn't have
    doctor's consultations anymore.

    It feels like I started back at zero. The new specialist says it isn't Lupus and that he doesn't know what it is and doesn't want to treat me for Lupus anymore.

    It was a shock for me, yesterday at the appoitnment.

    I'm so sad and concerned, because I'm still in a flare with a high sedimentation rate, but it's because of a negative ANA that he doesn't believe it's Lupus anymore.


    I'm so upset and needed to at least talk about this.

    I hope to make a lot of new friends.


    Margie

  2. #2
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    Does the new doc have the old doc's records of you (your medical records)? Does he know how to read? Is there any way you can contact the old doc somehow, and have him intercede for you? How about a different rheumy? Find another doctor. Most of the folks on here who have had lupus for any length of time can attest to what happens when you don't treat the lupus. I do NOT understand why a doctor doesn't want to treat an "unidentified ai issue", when they ALL cause similar issues. The treatment for RA is similar to Psoriatic Arthritis, which is similar to SLE, etc. ad infinitum ad nauseum... You need a 2nd, or even a 3rd opinion. The first doc didn't come to a conclusion of lupus based on nothing...

    btw, "Welcome to WHL". |;^)
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Thank you for your response.

    It means a lot to me to read your response.
    I went to the Thrombosis Treatment Center today and they told me the same thing.

    It's because of the Lupus that I develop Thrombosis so is what the first internal specialist that helped me, told me.

    I'm feeling so nauseous and have daily severe headaches.

    I will contact my family doctor to be refered to another specialist.

    Next week I will make an appointment to go to the family doctor.

    Do you know of a website where I can read more about zero positive Lupus? That's what the internal specialist told me that I had.

    Thank you for your response.

    Margie

  4. #4
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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Welcome to WHL. We are glad you found us.

    please make yourself at home and I look forward to getting to know you better
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  5. #5
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    You're probably referring to "seronegative" there Margie12. It is possible, though most docs don't diagnose without certain criteria. Similarly for rheumatoid arthritis, which is why multiple times of testing are usually required to be diagnosed with just about anything auto-immune, since the levels can fluctuate. RA can do very similar damage to lupus.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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