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  1. thanks for the info. I'm on the ace inhibitor...

    thanks for the info. I'm on the ace inhibitor now and hoping that works. If not we will have to try a more drastic approach and those other drugs have serious side effects. keep me posted if you...
  2. nephrotic syndrome, anyone else out there?

    Just wondering if anyone else out there has this condition. I've been diagnosed and would love to share info and collect info regarding this disease. I am told it's rare in women let alone someone...
  3. Thread: results

    by notsurerfh
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    511

    results

    Well i got the results of my biopsy back. I have a kidney disease called nephrotic syndrome and they have no idea what is causing it. I had some complications with the blood clot on my kidney...
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    everytime i sign on i look forward to seeing if...

    everytime i sign on i look forward to seeing if mine has changed. its very clever and takes the fear and seriousness of our worries away for a minute and that always helps.
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    the treatment is the same as autoimmune disorders...

    the treatment is the same as autoimmune disorders which i may have and may be causing the kidney damage. although the tests have been negative for the few i've been tested for. there are so many...
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    just an update

    well got my biopsy results in (never, ever want to do that again) and they show nephrotic syndrome caused by Membranous nephropathy. all the info i get keep looping around. i was told it's...
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    yes it is and i would request a second opinion...

    yes it is and i would request a second opinion and blood tests. i had the same pain and it was confirmed it was enlarged. not sure why but it was. all the tests came back negative. it went back...
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    i have had a similar experience with a doctor not...

    i have had a similar experience with a doctor not listening to me. but i finally found one that is helping. she needs to see doctor after doctor until one listens. she deserves to feel better and...
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    i am really fed up with our country. why can't...

    i am really fed up with our country. why can't we provide decent health care to everyone. it's pretty sad that you have to choose between eating and being in pain. i really hope the new president...
  10. Thread: nervous

    by notsurerfh
    Replies
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    1,207

    monday is when they can get me in so just a few...

    monday is when they can get me in so just a few more days of waiting. but at least now i have a goal and a great doctor that is taking care of me. he actually listened to me and took my whole...
  11. Thread: nervous

    by notsurerfh
    Replies
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    1,207

    it went well. i will go in the hospital...

    it went well. i will go in the hospital overnight sometime this week and they will take tisse samples from one kidney to analyze it. the only test left to find out why.

    my kidneys are...
  12. familiar

    so much of your story sounds familiar to me. i am 29 and will be 30 in august. i have been to a urologist to and still have no reason why. finally got blood work from my doctor by pushing and...
  13. Thread: nervous

    by notsurerfh
    Replies
    7
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    1,207

    nervous

    hey again all,

    just getting nervous about this afternoon. i am having my consult for the kidney biopsy. i am worried they are going to find something but more worried that they just brush me off...
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    i too suffer from acid reflux and lately a bottle...

    i too suffer from acid reflux and lately a bottle of tums is the only thing that works. i eat things i shouldn't but it has gotten worse as i get further into the diagnosis process. i know alot of...
  15. i know i don't have sleep apnea but i wake up...

    i know i don't have sleep apnea but i wake up feeling the same way, and i also suffer from allergies. i take medicine but lately i cant seem to kick them. the last three weeks have been like...
  16. Thread: answers

    by notsurerfh
    Replies
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    1,094

    thanks for all of the information. i have been...

    thanks for all of the information. i have been doing some reading up on it and i'm really hoping this test will be the one that diagnoses me. not looking forward to the laying down part, i also am...
  17. Thread: answers

    by notsurerfh
    Replies
    7
    Views
    1,094

    answers

    I had my doctor appointment and got an answer. just wondering if anyone else has had the same prognosis. my doctor says i have nephrotic syndrome and now need a kidney biopsy. just wondering what...
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    I read this and just had to put in my two cents:...

    I read this and just had to put in my two cents:

    i've been sick all week
    duh da da dunh

    got a fever startin to peek
    duh da da dunh

    darn throat hurts more and more
    duh da da dunh
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    snow

    we got almost 2 feet in that snazzy little storm, but living in New York we are used to it. I have to say though it's turning out to be a winter like my childhood days. Kind of miss knowing we'll...
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    teary

    That was beautiful Rob now you got me all teary eyed at work. Hope you have a great one too!
  21. Thread: xmas wishes

    by notsurerfh
    Replies
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    1,412

    xmas wishes

    Just wanted to wish all my new found friends a merry christmas and hope that time with your friends and family will bring some light back into your day.
    I am still waiting for results so a little...
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    gifts

    hoping you have a great holiday. maybe you should ask santa for a new husband!
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    xmas

    my daughter is 5 and is just getting the hang of christmas. I really look forward to it and how much fun it is to be with my family. I haven't really disclosed everything going on and I think alot...
  24. Thread: done

    by notsurerfh
    Replies
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    798

    done

    Well I'm glad that round of tests are done. The blood work is no biggie but the CT scan with contrast isn't fun at all. That stuff you drink is horrible it's making me sick and I drank it at 8 am! ...
  25. Thread: Newbie Here

    by notsurerfh
    Replies
    6
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    827

    new too

    I'm also new and awaiting a diagnosis. I pray everything goes well with your pregnancy. Good luck with your future and I'm keeping my fingers crossed for you.
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