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Thread: New Here - Dx question

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    Default New Here - Dx question

    Hello. New to the group and looking for answers. Will try and make my long story as short as possible. Summer of 2018 I had an episode of Papillitis (essentially optic neuritis affecting the nerve head/retina). Battery of tests: MRIs, bloods, lumbar puncture to rule out MS and other autoimmune disease. Nothing found. Ten months later, 2nd bout of papillitis. More testing, again nothing found. Five months later (Oct 2019), 3rd bout of papillitis. More testing, even went to the Mayo clinic with no answers aside from "Idiopathic Recurrent Papillitis". Most likely autoimmune in nature with the recommendation of starting Immunosuppression therapy. Have been on 20 mg Prednisone since Oct and just started MTX under guidance of local neuroimmunologist, who also suggested we check for Sarcoidosis since it can cause systemic inflammation. To my surprise, chest CT shows "evidence of granulomas" (few small calcified lesions) along with a calcified lymph node. Bronchoscopy (biopsy) performed, sufficient samples retrieved but NOTHING is found: no Sarc, no granulomas, no infection, etc. In my research I stumble on Wegener's and wonder if this is actually what I'm dealing with? I've had chronic sinus pressure headaches for the past decade (no infection, runny nose, crust, etc... just pain/pressure). I was "Dxd" with Raynaud's after a trip to the ER a few years back when my left hand turned blue. My eyes and lid margins have been red/veiny for years (not bright red like pink eye, but veiny and irritated looking). I've had tinnitus off/on for years with increased volume as of late along with pain/pressure and intermittent muffled hearing from time to time. My knees are killing me. Does any of this sound familiar to anyone? I'm planning to call a vasculitis specialist tommorow, but wondering if any of the blood testing, etc for Wegener's would even be accurate at this point since I'm on Pred+MTX already? I'm so tired of not knowing what's going on with me but am also terrified of finding out what's wrong with me at the same time. 😞 Neither Sarc nor Wegener's are something I want to have.

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    Default Re: New Here - Dx question

    Since youíve already been to Mayo (I assume in Rochester), you may want to get an appointment with one the vasculitis docs like Ulrich Specks.
    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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    Default Re: New Here - Dx question

    Yes, Rochester. Thank you.

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    Default Re: New Here - Dx question

    A lot of the auto immune diseases are similar in their manifestations and often they are treated in a similar manner like using pred meds and something to suppress the immune system. I would think that who ever you saw at Mayo could easily consult with another expert to help you feel a bit more certain that they have the best diagnosis for treating you. Although the treatment may well be the same.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New Here - Dx question

    Quote Originally Posted by drz View Post
    A lot of the auto immune diseases are similar in their manifestations and often they are treated in a similar manner like using pred meds and something to suppress the immune system. I would think that who ever you saw at Mayo could easily consult with another expert to help you feel a bit more certain that they have the best diagnosis for treating you. Although the treatment may well be the same.
    Thank you. I actually made an appointment with a local vasculitis specialist (who's own father apparently had the disease), so hopefully I'll get more answers before too long.

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    Default Re: New Here - Dx question

    Hi Weglee,
    Your father has vasculitis? Thatís interesting! There has been several debates about vasculitis possibly being genetic.
    First off, when I was first diagnosed I was placed on methotrexate & prednisone. It worked for several years.
    When I first started showing symptoms the Drs thought I had a lacrimal gland tumour. My eye lid swelled. Then I got arthritis. Then I got rashes around my eyes. Then I got scleritis, tinnitus, bleeding lungs, ect.
    So your symptoms sound very familiar!
    Hope you get a diagnosis & treatment soon!


    Sent from my iPhone using Tapatalk

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    Default Re: New Here - Dx question

    Hi Natrice,
    Thanks for the response! Sorry for the confusion... the Dr I'm going to see, his father had vasculitis (not my father).

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    Default Re: New Here - Dx question

    wegLee: From my experience so far (as a patient) there are no fixed "markers" in the tests which will help the doctor determine that its Wegeners. From the symptoms you mentioned and responses to the meds - its likely to be Wegs but doctors would know the best. Be patient, think positive and listen to your body. Ask and share with yourself, your doctors and great community source like this forum. Good luck and hope you feel better soon!

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    Default Re: New Here - Dx question

    Shank, thank you so much for your reply!

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