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    Default Possible Wegner's but still in limbo

    Hi everyone, I've been lurking on this board but for a few days so I thought I would introduce myself. I'm 33 years old and I've had weird autoimmune symptoms since I was 19. I've had several episodes of pleurisy where a CT found lung nodules but I never had a firm diagnosis of what it was, was just told to take ibuprofen and eventually the nodules would go away.

    I had a nodule on my eye for a while and saw an optometrist who did a biopsy. The only thing which showed up was that there was a high amount of white blood cells in the nodule. Then, after the biopsy the nodule never grew back and my pain eventually went away.

    At 30, I suddenly had a flare of horrible joint pain. I went to see a rheumatologist and the only abnormal blood test was my CRP was slightly high. Because of the level of pain, she put me on Pred and methotrexate which immediately helped. I weaned myself off pred in a few months and continued methotrexate for a few years. Then, a new rheumy I saw felt I had had reactive arthritis due to pneumonia and didn't need to be on methotrexate so I stopped.

    About 9 months later, I was feeling fine but suddenly developed muffled hearing in 1 ear. After that began the most hellacious series of health problems Ive ever had; pain, ear infections, more hearing loss, very loud tinnitus, both ears affected. This all began Sept. 2019. I had sinus surgery, eustachian tube dilation, and tubes put on. Despite the tubes, my hearing loss continued to get worse, and I have fluid leaking out of my ear nightly. My ENT didn't know what else to do and referred me to an otologist. At this point I've developed numbness in my tongue, sores in my nose, and feel generally crappy every day. After about a month of unsuccessfully treating it with more antibiotics my otologist said he felt it may be Wegner's granulomatosis. He sent me for testing and so far the things which have turned out abnormal have been ESR of 51, trace blood in the urine, and a CT found a lung nodule. My ANCA was positive but the subsequent tests for specific antibodies were negative.

    I'm awaiting to see a new rheumy and a pulmonologist but it will be months before my appointment. Meanwhile, I'm struggling to keep my job with this huge hearing loss and trying to figure out how to cope with the tinnitus, which has been my most bothersome symptom. I'm scared that because of how long I have to wait to start treatment I won't regain my hearing.

    Thanks for reading this. I have to say I really appreciate the positivity on this message board. I visited a support site for tinnitus for a while and the level of negativity on there really brought me down and made me feel like my life was over with this affliction.
    Last edited by Solose; 01-22-2020 at 03:30 PM.

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