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Trisha’s Misdiagnosis Story

Here’s the full-blown version of Trisha’s misdiagnosis story.

Since that fateful odyssey, she has worked with other patients who have SPTCL.  You can read more about them at this website.

And what’s Trisha doing today?  You can learn what she’s up to here.

 

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  1. justordinary

    Absolutely amazing story! Thank goodness you do not have cancer.

    I am in shock too though by how they tried to convince you it was cancer and was pushing for chemotherapy! Very frightening indeed. Ever thought of having a lawyer take a bite out of them for that?

    I am so glad to have someone like you out there fighting for patients who may face the say dilema.

  2. DJSmd

    I am so sorry to say, that as a Family Doctor of 17 years(just quit 3 months ago) your story is not really amazing or startling. I am ashamed to say it is actally somewhat common.
    I did my best to be accurate, careful, thoughtful, and considerate. I’m sure I fell short at times.
    I did my best to encourage that in my colleagues. They fell short too.

    I have come to believe there is a force behind this mess of a “health care” system.( I call it the Medical-Industrial Complex). And I believe it reflects the seamier side of the American character. Greed, self interest, cynicsm. I wish the medical community(of which I still feel a part, barely)had some moral outrage at the direction we seem to be headed. But their focus is too near.
    Best wishes.

  3. milette

    your story have bring back memories of my experiences with doctors. before i was diagnosed with lupus, i got high fever, rash, cough, throat problems, joint pains etc. I went to four different doctors. At the time I have fever, throat problem and joint pains 1st doctor diagnosed it with flu and gout athritis. After a few weeks, i did not get better. I went to another one. This time I have a bad cough that the doctor ordered XRAY on me. And based on the XRAY result told me that I have pneumonia. The doctor gave me antibiotics and many meds. Until it came to a point that I lose half of my weight and still sick and got rushed to the hospital. Fortunately (or unfortunately) my malar rash appeared. Which gave the doctor in the hospital a clue on what they are dealing. But the diagnosis came after a week. Although, they have known my sickness, they have assigned a nepro to check on me. She was no big help to me. All she did was to increase and decrease my prednisone and did not do any of the treatment i have read on the internet. It came to a point that she declared me as prednisone dependent for life and told me to undergo kidney biopsy. Because of that I went to search for other doctor. Which is painful on my part because some doctor have told me that I cannot be cured. Luckily, God made a way for me to meet my rheuma now. I would have wanted to go back to those doctors who have told me that I cannot be cured. Yes, they are right I am a LUPIE for life but I can be put to remission to enjoy life. Now, I am happily married with a growing beautiful baby. I just hope you can reach out to a lot of people and may you story inspired those patients to seek for knowledge of their disease.

    Can I ask your permission to link you on my blog. Thanks.

  4. Diane

    Can an advocate interfere with the families choice in treatment??

  5. Dad

    Just getting caught up on your blogging — at 1:20 Saturday morning.. find it very interesting…. still shudder when I remember those days iin the summer of 2004 .. and beam with great pride when I ruminate on your courage and steadfastness in meeting the challenges….

    …and, oh yes, happy, happy first anniversary…

    Dad

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