Discussions By Condition: Urinary conditions

Wagner's Disease

Posted In: Urinary conditions 19 Replies
  • Posted By: Anonymous
  • August 21, 2006
  • 01:51 AM

My father was diagnosed with Wagner's disease in the early 70's. It has since taken his kidneys. We are preparing for a kidney transplant. I'm hoping someone might have some information about the disease. Thank you.

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19 Replies:

  • From what I have read, Wagner's disease has to do with retinal degeneration, and causes blindness--what doctor diagnosed your father with Wagner's that took his Kidney's and are you sure that the diagnosis is correct?
    Anonymous 42789 Replies
    • October 20, 2006
    • 06:08 AM
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  • Dear myersrj ... are you sure the doctor didn't mean Wegener's diease (Wegener's Granutomatosis) ... that's an inflammation that affects many tissues in the body and frequently involves the kidneys ... good luck and good health to you and your family
    Anonymous 42789 Replies
    • November 11, 2006
    • 02:25 PM
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  • My grandmother was also diagnosed with Wagner's Disease after her only functioning kidney stopped functioning. She passed in '95.
    Anonymous 42789 Replies
    • November 28, 2006
    • 05:18 AM
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  • My Stepmother was diagnosed with Wagner's disease, but it hasn't done anything to her eyes. She's gone deaf in her left ear, and had a lung inflammation, but basically nothing else. I'm confused about this, because everything I've read said it only caused eye problems.
    Anonymous 42789 Replies Flag this Response
  • I agree about Wegener's involving the lungs and the kidneys as well as the upper respiratory tract (like the nose). It forms granulomas in which necrosis (death) occurs. It is usually treated with corticosteroids to help suppress the immune system and keep the necrosis from progressing.
    Anonymous 42789 Replies Flag this Response
  • Hi, It is Wegener's Disease or Wegener's Glomorulonephritis. My best friend's brother had it. It will cause kidney failure and end stage renal disease. You can find some wonderful articles by searching the right spelling. I frequently spoke with my friend's doctor the entire time he was sick from this horrible disease. Good luck, and God bless.
    JustJean1 1 Replies Flag this Response
  • Hi.My Brother Had Wagners Disease.he Died Recently.everyone Though He Was Ok Until They Amited Him Into The Hospital.he Died About 2 Months With Being In The Hospital.they Found It Too Late.
    Anonymous 42789 Replies Flag this Response
  • My mom had wagners and she lost her kidneys 2 she had to go onto dialysis and she became diabetic and things just got worse i am not sure about this who eye thing but that i keep reading about
    Anonymous 42789 Replies Flag this Response
  • Wagner's or Wegener's ... it would be very helpful if people would just get the attending Doctor to actually spell out the term. There is a major difference between the 2 ...i think it's just the slang that gets us caught up in saying it ..wagners (blurting it out too fast)... 2 syllables verses 3 ......thanks ... we recently had a community member diagnosed and i was curious to read up on the disease for myself .
    Anonymous 42789 Replies Flag this Response
  • Thank you for pointing out the different spellings so I know what to look up now. I just learned my friend passed from Wegener's after 2 weeks at U of M Hospital. Her husband said the name of the disease so fast I miss spelled it when I started my search.
    Anonymous 42789 Replies
    • September 22, 2007
    • 01:16 PM
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  • In 2005 my father-in-law had his kidney removed, diagnose with cancer. He seemed to be doing fine, but in Feb.07, he started to complain about ear aches. He was in a great about of pain, but no one seemed to know what to do. His physical condition got worse and worse and he ended up in the hospital with the suspicion of a possible stroke or heart attack. Finally he has been diagnosed with Wegner's disease, only after his nose has collapsed and he is no longer able to swallow. For 6 months he was complaining of chronic ear pain and hearing lose, difficulty swallowing, and then the muscle detached from his arm a condition his family doctor said was common for a man his age. He is 82 and now requires dialysis because his only kidney is failing.What is the required treatment for this disease and can the degeneration of his tissues be stopped now that we know what he has?
    Anonymous 42789 Replies
    • December 10, 2007
    • 09:27 PM
    • 0
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  • From what I have read, Wagner's disease has to do with retinal degeneration, and causes blindness--what doctor diagnosed your father with Wagner's that took his Kidney's and are you sure that the diagnosis is correct?I don't know about that but I do know it is a kidney disease. My firat husband died from it in 1981 . A Dr. Rios in amarillo ,Texas dialisis Center knows all about it and can give you info on it ,It eats like cancer but is not canser, it ate his kidneys up before we found out what it was , Dr. Rios discovered it and doctored him for it , there wasn't much could be done then , but what the doctor learned on my husband he ke[t three ladys from our vacenty alive for several years . I haven't kept up with it but I am sure Dr. rios is still exploring the disease looking for other cures , if he isn't still thhere they know where he is and he can tell you more about it . I believe his name was Migale Rios , it has been so long ago I 'm not sure but I do know it is Rios is his last name . , I do know that it is a kidney disease . if I can be of any more help let me know I do hope this helped some . Jolene
    Anonymous 42789 Replies Flag this Response
  • This disease is called Wegener's Granulomatosis. It is a autoimmune disease and is inflamationof the blood vessels in your body that restrict blood flow to the major organs like lungs, kidneys, also effects your sinuses and ears. There is no cure for this disease but it is treat-able with prednisone and a chemo drug together. I was diagnosed in 2004 with this disease.I'm in remission right now but I started doing research and found a doctor in Kansas City, Mo.Most people and doctors don't know anything about this disease, when I first got sick I had to be hospitalized because I couldn't walk because my ankles and knees swelled to where Icouldn't even stand and I was coughing up blood, they thought I had pneumonia at first, then they thought I had cancer but after two lung biopsies the diagnosis was wegener's, thank god I found a dr. that knew something about the disease because without proper treatment the survival rate is like 5 mo. If anyone has this you better get to a dr. that knows the disease because from what I've read about once it attacks the kidneys there is not much that can be done. If you look this up with the right spelling you'll find a lot of information on it.
    Anonymous 42789 Replies Flag this Response
  • My Mom was diagnosed with Wagner's disease. I'm hoping someone might have some information about the disease. Thank you.
    jennifer0706 1 Replies Flag this Response
  • :confused:My friend was diagnosed two weeks ago. She already was having kidney problems. She went toThe doctor because her eyes looked like they were bleeding. She took prednisone for a while. ThenCame off the prednisone so she could be diagnosed. She now takes prednisone and Cyclophosphamide (Cytoxan) belongs to a class of drugs known as alkylating agents, which were originally developed and are still used to treat some types of cancer. It is in the class of medications referred to as immunosuppressants – medicines that can decrease the immune response. I am hoping that this will help her.Cowgirl
    okiecowgirl 1 Replies Flag this Response
  • I am 13 years oldand was diagnosed with wagners when I was 11years old.Everything that the other uses have been saying is wrong.Wagners is an anti body that attacks your orgins because the wagners cells is very simmilar to your bodys. There for when your body tries to fight of the wagners anti body not realising that it is your bodys own healthy cells which is what causes the attacking of the kidneys and liver and so on.I my self did need a kidney transplant but survived without it as they put me on cortizone early.I had inflamed lungs drowned with blood and inflamed liver which was easily fixed.To this day I have bruising and scarring but they are 0.9 on the scale of normality.wich is the high of normal. I suffered symptoms of joint pains as it attacked my vascular system. Blood noses, Coughing up blood, Anemia blood in the fesis strong headaches and constant aches in the stomach.I hope that this will worn people of possiblity of having this desease and I am extremely lucky to have survived it all.
    Anonymous 42789 Replies Flag this Response
  • If you want more information about Wagner syndrome / disease, which is OCULAR ONLY, please visit www.wagnersyndrome.eu
    Anonymous 42789 Replies Flag this Response
  • My brother was very sick to the point that we were sure he was going to die. He was in the intensive care unit for over a month when they tansfered him to another hospital Mercy in Sacramento Calif. there is a doctor there that knew right away what he had and started treating him. It took them 3 weeks to get it under control. So if you live California, and have any idea that you or someone else may have this. Contact Mercy Hospital. I don't have the doctor's name, but he is a specialist in this field. Thank god it was there when he was needed. My brothers first systoms where night sweats. He told his regular doctor about this and his doctor was not concern. Then his legs swelled so much that they were almost to the point of spliting the skin. That's when he went to the emergency room and was admitted to the hospital here in Woodland. They got the swelling to do down and released him. He was back in the emergency room the next day. He had blood clots in his lung and also in both his legs. They have no idea how you get this but it's nothing to mess with.
    Anonymous 42789 Replies
    • October 22, 2009
    • 03:11 AM
    • 0
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  • I think the people on this forum might have Wegener's granulomatosis. For more please see:http://www.vasculitisfoundation.org/wegenersgranulomatosis
    Anonymous 42789 Replies
    • November 7, 2009
    • 00:17 PM
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