View Full Version : I think the doctors are wrong!
12-08-2008, 09:51 PM
Hi, my name is Sherri. Last Christmas I was diagnoses with minimal change disease when I suddenly had renal failure, with about 20% functioning of my kidney's. I was on 90 mg of prednisone when I came home from the hospital and was doing well until I relapsed at the end of May, taking me from 5 mg of prednisone back up to 15 mg, and now I'm on 10 mg. My doctor added 100 mg cyclophosphamide when I became steroid resistant. When mywhite blood cell count dropped too much, she lowered it to 50 mg per day. On my next blood work a few months later showed I was still losing proteins, so the cyclophosphamide was no longer working, and now my liver numbers were not right, so my doctor assumed that this drug was affecting my liver and we stopped this drug. I received a phone call on thursday, saying that my last blood work results showed positive of Lupas.
I am so confused because if I had Lupas, wouldn't it have shown when they tested me for in in January when I first had kidney problems? Also, all the posts I've been reading have been people with so many sympthoms. All I have for symthoms is fatigue, and my kidney and liver problems. I've had depression, anxiety, mood swings, sweating, which I've had since being on the prednisone. I will going for an ultrasound on Friday on my liver, and will have to have a liver biopsy (I don't know why yet).
I think the doctors are full of it. I don't seem to have enough symthoms to be diagnosed with Lupas.
Can someone please advise me if they think the doctors diagnosis is correct?
12-08-2008, 11:09 PM
FIRST OFF WELCOME TO THE SITE MY NAME IS SANDRA BEFORE I WAS DIAGNOSED I HAD PNEUMONIA FOR FIVE MONTHS IN A ROW AND ALOT OF FATIGUE THEY DID LABS IN AUGUST AND EVERYTHING CAME OUT OK JUST MY WHITE BLOOD COUNT CAME OUT A LITTLE HIGH WELL IN JANUARY I STARTED GETTING WORSE AND I SWITCHED DOCTORS SHE RAN EVERY BLOOD TEST SHE COULD THINK OF WELL MY ANA PANEL CAME BACK AND IT TURNED OUT I HAD LUPUS AS THE MONTHS WENT BY I STARTED HAVING MORE SYMPTOMS NOT SAYING THAT WILL BE YOUR CASE I HAVE ALWAYS COMPLAINED OF JOINT PAIN I BLAMED IT ON OLD SPORT INJURIES BUT ANYWAY THAT SOME OF MY STORY MAYBE SAY SUSIE CAN GIVE YOU MORE ADVICE ON THIS AS FOR ME MY DR TOLD ME SOMETIMES THE TEST COME OUT NEGATIVE AND WHEN THEY REDO THEM THEY ARE POSITIVE
12-09-2008, 05:04 AM
Welcome to the site. If you have Lupus it may just be affecting your kidneys right now. I don't quite know what to say. There will be others that come in here that may have better answers for you. Please keep posting.
12-09-2008, 09:45 AM
There are eleven criteria which are used when diagnosing Lupus. A patient need only to meet four of those eleven criteria. From your description of your symptoms, you have met four of the criteria:
2) Kidney involvement
3) Liver involvement
4) positive lab work
Also, one of the most heinous aspects of this disease is the fact that it changes within each patient. New symptoms develop over time, lab results that were once negative, now are positive; old symptoms may go away only to be replaced with new and different symptoms; and symptoms worsen over time. So, it is quite possible that, when first tested for Lupus, you did not meet all four requirements and that now, you do. This is not unusual at all.
Additionally, this disease is famous for its relapse/remission syndrome. Many of us may be suffering from a wide variety of symptoms as well as overlap diseases at any given time. Then, in the following weeks or months, all of those symptoms and overlap diseases seem to go away and our lab work shows negative or very minimal disease activity. However, in the next few weeks or months, we are down again with flaring symptoms, raging overlap diseases and blood work that shows that we are having severe disease activity.
So, what I am trying to say is that your doctors are, most likely, NOT full of it. But, that your disease is doing what it does best....baffling doctors, ravaging patients, and changing for no rhyme or reason. Most treatment is geared towards avoiding these changes and staving off any flare ups. If your internal organs are already damaged, treatment hopes to stop and/or reverse that damage.
Now that you are here with us, please stay and use us as much as possible so that you can learn everything about Lupus, its overlap diseases, its treatments, its medications, and - especially - how to make appropriate lifestyle changes so that you can avoid any further damage and/or any severe flare-ups of the disease.
I wish you the very best and I am so glad that you found us :D
Peace and Blessings