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Please help... how likely is it?

Posted , 6 users are following.

sharonamy1965
sharonamy1965

How likely is it that I have Wegener's disease? After coughing up blood for 2 months I've just found out I have nodules on both lungs through CT scans. I can tell from the blood tests Doctor ran he suspects this disease. Awaiting results and a biopsy. I have a 3 year history of year round "non allergic rhinitis". Each year being awful from Feb to Sept mainly due to horrid cough and loss of voice in July and August. I have noticed multiple hard lumps under the skin all over my body. I have had sore red eyes for years and have joint pain. Would really appreciate your thoughts..

0 likes, 6 replies

6 Replies

  • courtney_71550
    courtney_71550 sharonamy1965

    Posted

    Dear Sharonamy,

    I think your Dr. Is right. My husband had constant rhinitis and nose bleeds, heavy crusting in the nose and coughing up blood as well. One of his eyes would be very red and light sensitive. Recently he has been very hoarse and his voice comes and goes. His Dr. Told us Wednesday that his WG was flaring up again and put him on methotrexate and soon Rituximab infusions. I wish you all the best and the sooner the diagnoses the better! Keep us posted.

    Courtney

  • Anni11
    Anni11 sharonamy1965

    Posted

    It's very possible you have WG sounds a bit like it, especially the Rhinitis part which I had before diagnosis, as regards the lungs I'm betting test results will show WG, but let me say this Sharonamy dont worry you can live with this disease I have for 20 yrs and still going so plz NO worrying, keep in touch let me know how your getting on x
    • alex004
      alex004 Anni11

      Posted

      Hello Anni.

      My father has just been diagnosed with severe Wagners. How has your quality of life been? I want to know if there's hope for my father. he was in excellent health otherwise.

  • sharonamy1965
    sharonamy1965

    Posted

    Thank you very much Courtney and Anni smile Feel very confused at the moment. The only benefit to having this disease at the moment would be if it's not cancer..
  • jan6648
    jan6648 sharonamy1965

    Posted

    Hi Sharonamy  It does sound very likely that you have wegwner's.  I too have been suffering for 11 years but only diagnosed for 18 months.  I had to ask my doctor for a referal to Dr David D'Cruz at St Thomas's London to get that diagnosis even though I had most of the common symptoms.  Hope that you get luckier than me,  Regards  Jan6648
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