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Thread: Multiple Diagnosis, Wegener's, ANCA Associated Vasculitis, Still's Disease + More

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    Default Multiple Diagnosis, Wegener's, ANCA Associated Vasculitis, Still's Disease + More

    It is a very long story but I will start with a condensed version. My Daughter(30) got sick, flue like symptoms, around the 1st week in March, 2010. While in the ER her right foot went numb(foot drop) within a little while, the numbness turned to extreme pain(neuropathy. The numbness and pain traveled up her leg to just above her knee and and stayed. It wasn't long until her right hand did the same thing. My daughter was in agonizing pain and there wasn't a thing that I could do.*Fast forward* She was admitted and the tests began, They finally got her semi comfortable with heavy duty pain meds. Tests, tests and more tests, every test was abnormal. Her spleen, liver, kidney and lymph nodes were all enlarged. They though that she had Lymphoma. She had a bone maro biopsy on her birthday, it was negative. I have to give them credit, they never gave up on her. She had so many Specialists, I could never list them all. The next test was to be a biopsy of a lymph node on the back of her kidney. A Rheumatologist checked right before that was done and ordered his own bunch of tests. Within a couple of days he had a diagnosis(well at least a partial one) By this time she had been in the hospital for over a month. Another strange symptom was that she would spike a temp of 103 every night at 7:00pm. You could set your clock by it(Symptom of Still's Disease). He diagnosed her with ANCA Associated vasculitis, Mononeuritis Multiplex,HTN,Vasculitic Neuropathy, and Peptic Ulcer Disease,and Still's disease.
    The Wegener's Disease diagnosis came later though the symptoms had been there for a long time.

    Part II Later

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    Hi amysmom, nice to meet you. I'm sorry your daughter has been through so much. Acute, simultaneous onset of Still's and Wegs-- very unusual. Did they do any testing for toxins or was she exposed to anything unusual in the couple months prior? Things like pesticides, carpet cleaners, vaccinations, etc.... The reason for checking on it is to avoid further exposure which could exacerbate the conditions or cause new ones.

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    Welcome Amysmom, thanks for sharing her story and please let us know how she is doing time to time. Take care of yourself.

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    Default Update

    Well another very long day full of tests and an appointment with the Pulmonologist. The PFT did not go as well as we had hoped. My daughter's lung compacity is 40%. The Doctor said she has the lungs of an 80 year old woman, she is 31. She was also diagnosed today with severe COPD.

    Sange, everything that has happened with her has been very unusual. She was not exposed to anything toxic that we can think of.

    Elephant, thanks for the welcome!

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    What is their explanation for her lung difficulties?

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    WOW! You and your daughter have really been put through the wringer. I hate to hear stories like yours, but our disease is rare enough that it often goes undiagnosed for a long period of time. Believe I read somewhere that the typical diagnosis takes 18 to 24 months. In my case, I had symptoms (lymphnodes and thyroid) in May 2008. Conclusive diagnosis didn't come until May 2010. Keep us informed, use the site to vent, ask questions, etc. Welcome!

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    Quote Originally Posted by Sangye View Post
    What is their explanation for her lung difficulties?
    I am just learning about all of this but wouldn't the Wegner's & the COPD account for her difficulties?

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    Amysmom, I was told the same thing by my pulmonologist a 18 months ago. He stated that parts of my lungs were of a 80 year old. But I improved within a year. So don't give up hope. I was prescribed many meds for COPD and I took albuterol as needed and never even used the advair. Have her tested again in about a year. Keep us updated.

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    Quote Originally Posted by amysmom View Post
    I am just learning about all of this but wouldn't the Wegner's & the COPD account for her difficulties?
    I meant what lung involvement does she have with Wegs that would cause problems. Some people have granulomas (nodules) and others have hemorrhaging. Some get both. Scarring (fibrosis) can also occur, and is seen on x-ray and/or CT.

    COPD is not normally found with Wegs. Was she a smoker or exposed to smoke?

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    Default Symptoms

    Listed below are the organs commonly involved in Wegener's Granulomatosis and the specific disease manifestation(s) in each organ.

    Ear
    Eye
    Nose
    Sinuses
    Trachea
    Lungs
    Kidney
    Skin
    Joints
    Nerves

    Sangye, I think that maybe the Doctors have made the diagnosis of Wegener's with my daughter due to the over all involvement rather than solely the involvement of the lungs. She has involvement in everything in bold above. I wish that I could give you a better answer but there is so much that I am unsure of at this point. Based on testing: Biapical pleuroparenchymal scarring, increased number of 10mm and subcentimeter gastrohepatic liagment and retroperitoneal lymph nodes. There is also mention of Bilateral Air movement decreased in bases.
    They are also checking alpha-1-AT given her young age and severe reduction in FEV1.

    Please feel free to decipher any of the above info taken from the Doctor's report.

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