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Thread: Hearing Problems

  1. #11
    Bing505z is offline Banned for being a douchebag
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    I had the muffled right ear. I still have tubes in, but I am thrilled to say finally that ear is back to normal.

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    I was diagnosed 1 1/2 years ago. Limited disease. No kidney involvement. My nose was always the worse. I'm just off meds now but probably about to go back on due to repeating symptoms. Sinuses are a mess. Everything else seems ok. For the past 2 weeks my ears have felt blocked. Some pain at times. I saw the ENT he said they looked fine, hey could be suffering since he sinuses are so inflamed. Anyone else had this?
    Also I have lots of joint pain and my Rhumetologist doesn't seem to make much of it like he doesn't think it's connected. It's listed as a symptom online. What are other peoples experience with pain?


    😃 victoria
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    My pain was roaming and pinpoint. One day my wrist would hurt, the next it was my ankle...always in the joints, duh. It was never excruciating, kinda like bumping the coffee table with a shin, hurt then lessened, then moved on...weird.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    I had to go back on Pred last month after being in pain for quite some time. Just like DD's. I did not have ear involvement however I do have terrible tinnitus that screams at me all day and night.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    B_in_Florida, the hearing issues are common. I have tinnitus and left ear is badly damaged (i.e. it's deaf enough for me to require an hearing aid).
    The symptoms you're suffering from would not signify a flare or relapse with ME because I suffer from those symptoms daily even when in remission.
    BUT the fact that this is a NEW symptom for you, would make me more concerned. It's easy for me to say get it checked out because I'm not the one paying for your check up. It could be an unrelated ear/sinus issue/infection, but if it doesn't settle down soon or especially if any other WG type symptoms appear, get yourself checked up. Waiting to treat a WG flare could end up being far more costly in the long run than to continuously ignore it.
    Diagnosed April 1995

  6. #16
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    Thank you for all the replies, I didn't realize there were this many replies, I just saw one or two additional after my last reply. I won't necessarily address all replies individually since they're mostly the same, but I do have thoughts about them. It's still important to me that everyone with these symptoms replied about how it effects their own condition.

    Yes, I guess what I have is tinnitus, I had it in the past before, but wasn't sure if this was exactly what it was. When I had it it was usually only for short amounts of time, though I had it once for 2 weeks straight when I first got it - the constant ringing that I couldn't get away from nearly drove me insane.

    Now I am having hearing problems on the right ear almost as much as on the left. Can barely hear anything except loud or high pitched noises. Everything is muffled. My hearing quality in my right ear varies from how I angle my head(but not much). If I tilt it to the right shoulder it seems to get slightly better and feel a little less stuffed. Right now, as I'm writing this, the ringing is pretty strong - it's been on-and-off over the last few days at different times of the day.

    My nose gets stuffed all the time, and even when I blow my nose it seems to stay stuffed a lot. My left side of my nose seems to be bleeding a little since there's usually a little blood in the mucus. My nose sometimes clears up a bit mysteriously on its own and I can breathe better. When I wake up in the morning, the left side of my nose is frequently blocked by a bit of hardened stone-like mucus like someone mentioned near the opening (geez, if I told this to anyone in public it would disgust and turn them off so fast!). It also seems to make me sneeze frequently at times - probably the nose trying to clear itself up. I also cough randomly now and then, but that would be more lung related.

    I'd love to be able to be able to take some medications and have this all go away. I'm supposed to be DONE with this damn disease! It kind of terrifies me to think that this hearing may be permanent and what else these symptoms could foreshadow.

    I'm not sure if I addressed everything. Not sure if I should be going to a Pulmonologist or some other type of doctor about this, so far I've only been seeing a Pulmonologist for check-ups.
    Last edited by B_in_Florida; 09-28-2014 at 03:19 PM. Reason: grammar & spelling
    Just call me "B".
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    I had bi-lateral mastoid-ectomies due to the little bones in my ears being attacked by WG. I lost hearing and never got it back.. I wear hearing aids now and have since age 25. Have them check for issues and flares in the ears. If you notice your eyebrows suddenly quit moving up and down then get to a dr asap. My eye brow quit responding to me trying to move it and the infection had moved onto my brain. Please do not let this go. Make some dr. listen to you before it gets too bad.

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    The crusting/congestion with bleeding along with your ear symptoms may be a sign of active disease. The description of your ear and nasal symptoms sounds very familiar to me, since it is still less than a year ago that I started to have those very same problems, eventually leading to diagnosis and effective treatment. If I understand correctly, you are not on any meds and have not recently seen a doctor? You should not be waiting to see if this clears on its own because if this is a relapse or extension of disease waiting will only make things worse.

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    Hi again B_in_Florida.
    In my first reply I said if any other WG related symptoms appear get yourself to the Drs. You've now mentioned blood in mucus and cough. People with WG (active or in remission) can get coughs without it being WG related and if you're already sneezing this could cause blood in mucus. BUT I really think you're now showing enough signs to get yourself checked up.
    Like I said earlier, the longer you leave it the more chance of ending up with much more expensive medical bills.
    Diagnosed April 1995

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    What Dr. should I see? Pulminologist like I've been doing?


    Quote Originally Posted by Velma View Post
    .... If you notice your eyebrows suddenly quit moving up and down then get to a dr asap. My eye brow quit responding to me trying to move it and the infection had moved onto my brain.

    I'm not having any eye-brow problems. I had though WG was either brain-related, or wasn't. That was the impression doctors seemed to be giving me.
    Just call me "B".
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    "How's it going?"
    "Like crap."

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