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Thread: Newly diagnosed -or not sure what is going on.

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    Default Newly diagnosed -or not sure what is going on.

    I hope I can get some help. I had a Positive Anc and Serum Titer showing some auto immune disease. I was sent to a Rheumatologist for further extensive blood work and other tests. Chest x- ray= neg; Echo= neg and PVT= neg. All the labs were neg except for the Proteinase-3 which was 47.9 , ANCA was positive. My ANCA titer was positive. For the last 2-3 years I have had on- going viruses which take months to go away. I had a tube placed in my ear 2 years ago for fluid, which helped. Swollen lymph nodes every time I get a virus, and fatigue. Since Dec. I had another tube placed and I have some problems with that ear. Have seen an ENT, CT and MRI were neg but did see something on the right side. Not sure what. Have been continually sick for the last 3 months. I have been getting worse, kidney pain but US was neg. Dry mouth, SOB, night sweats, weight loss, difficulty at times climbing stairs with very sore joints. I am very congested in my head but not with sinus issues. Some days I feel great but I can really sleep but wake every night for no reason.
    The doctor I saw said I do not present as a typical Wegener's pt. Most they see are in the ICU by the time they are dx. Yikes. I look too healthy. In order to determine she will need to do a lung and kidney bx. If they come back neg then I am to go back to my PCP. I am seeking a 2nd opinion at a large University Hospital. I am fortunate to have excellent health care where I live with some of the best doctors. I will not be going back to her for a variety of reasons.
    Is it too early in the disease for any other test to be positive? I actually think this has been going on for a few years but after reading about this disease I am not sure what it is. I know this is not a doctor page but hoping someone can make me feel better- in my mind.
    Of course I don't understand how the Anc went from positive to neg. I guess it could be lab error but.....
    thanks for the website.

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    Welcome, Deanna! A lot of us were not in the ICU before we were diagnosed, or ever. A lot of us had WG symptoms for years before diagnoses, but they were construed as other things like recurrent sinus infections, asthma, allergies, etc. Some of your symptoms do sound like WG, especially the night sweats, weight loss, sore joints, and SOB. But that doesn't mean you have it. I hope you don't. I don't think it is too early to get it thoroughly checked out and have biopsies done, as long as there is reason to believe there could be disease activity in those areas. I hope you have experienced docs in WG, and you might check this link for experts in vasculitis who may be consulted with if one can't get to them: Vasculitis Foundation » VF Medical Consultants . Also, this list of docs recommended by patients in different geographical areas: http://www.vasculitispan.org/ . Best of luck, and keep us posted!
    Anne, dx'ed April 2011

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    Hi Deanna, and welcome to the Forum. Here's hoping you get the help you need.

    Your thought about going to the large university medical center is your best option. Here is a link to a list of Vasculitis specialists: Vasculitis Foundation » VF Medical Consultants

    I hope you can get a definitive diagnosis and competent care soon!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Dee, hi... I changed youre name! No one can say for sure, but opinion only, of coarse and in my opinion, yes it sounds like it could be... I would like to lie to you, however i cant, and would rather you be as alert to this as possible... Best case scenerio, is it isnt wegeners, but... Anne's advice is awesome, so I won't add anything, except to say, nice meeting you... This sickness, with its accompanying huge suck factor, can do some pretty weird things, so having blood work showing, not showing, is not a surprise! Best of luck! Debra...
    Live,love,and laugh...

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    Hi Pete, I feel better already just knowing there is a support for me, even if I am not sure I have WG. But it really looks like it. I go to the other doctor in 2 weeks and she is very highly regarded. If she can't figure out what is wrong with me I am at the best place.

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    Did you say your ANCA is negative but your PR3 is positive? Not sure if I an reading this correctly. My PR3 was 9.9 and pANCA positive. I had vision issues - my CXR was negative but CT scan showed nodules and cavitary lesions. Big mistake on my part was allowing them to do a lung needle biopsy - the doc cut into an artery and i ended up with a lot of problems. I later learned from this forum that with my positive blood work and vision and lung nodules that I did not really need the biopsy to make the diagnosis and to make matters worst the tissue they retrieved from biopsy was too mared by blood to be useful!

    I had ear problems and lost the hearing in my left ear a few years prior but never put it together with GPA but probably related, also had the wt loss but felt fine otherwise. Did they do a CRP or a Sed Rate?

    As Ann mentioned not all of use end up in ICU. Do get that second opionon from a doc versed in GPA .
    Last edited by Middlesista; 03-12-2016 at 11:31 AM.

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    Hi, my ANCA is positive, PR-3 is 47.9 and the C ANCA titer is 1:20. My anc was neg,but was positive in Jan with positive titers. C-rea protein was neg and Sed rate neg. All of my labs and tests, chest, PVT and echo were neg. She ordered the Echo because she thought I had mixed connective disease. But I do have this pain on my right side, about where my kidney is that has been bothering me for several months. The Ultra sound was neg.
    d

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    Wegs is hard to diagnose initially due to the myriad of symptoms it can present. You can plug all your symptoms into the website of find a zebra and see if Wegs comes up. It did for me but this was years after my diagnosis and confirmation of diagnosis with a kidney biopsy. A biopsy may not be conclusive unless they happen to hit a body part that is affected by active GPA. If the GPA is active in your kidneys the biopsy will usually be positive, lungs maybe if they hit right area, and sinuses and other areas lower probability of confirmation.

    Most good doctors with experience treating GPA can conclude by elimination if you probably have WEGS or if you might benefit from treatment for it since many other autoimmune disorders get similar treatment. Your lab work is equivocal so far and you might be lucky enough not to have GPA, but stick with the best doctors you can find to sort your symptoms out and to get the care needed to help you feel better. Don't give up. Be persistent and usually (often 90% of time) things do get better with correct diagnosis and treatment so best wishes for better health.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Hi Deana & welcome. In my beginning I checked and found that C anca is only positive in WG and in Crohn's disease. Pr3 is a subtle derivative of C anca.
    If its wg and the kidneys are involved then your creatinine should be above the normal, also findings of proteine in the urine.
    Also when wg is active, the hemoglobin might be dropping under the normal.
    What you describe sounds to me like wg smoldering: low level activity, not a flare, but still activity which must get treatment.
    Good luck & please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Hi Deanna and welcome.
    Everyone above has given you some awesome advice.

    I just wanted to say that just because you may have one thing (Mixed Connective) doesn't mean that you can't also have WG. I have been diagnosed with both, plus some others. It happens
    I hope the doctor you see in two weeks, has some more ideas
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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