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Thread: Still accepting new members?

  1. #11
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    Hi Lucky and welcome to you, from another fellow Aussie
    Gosh, there are a few of us on here now

    What part of Oz are you from? We love get togethers and maybe some other Weggie friends are out your way.
    We also have a facebook group for Weggies from Australia and New Zealand (only), if you are on facebook. It's a good way to know what treatments or specialists are happening in your own area etc.

    Take it easy
    Until we see you here again .......
    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

  2. #12
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    Hi Mishb, Im a Taswegian, yes I noticed on the map there are a few from Oz.
    Hi Middlesista, did your hearing come back? I struggle with hearing nearly gone in the left ear but the right comes and goes with the barometric tide every day. Very frustrating. Two ENTs have told me that the nerves are dead so no hearing will return, they believe the loss is from my industrial background however it was fairly good up until the wegs got a hold. No coincidence I believe, but obviously if the nerves were gone then there would not be any hearing at all would there. Also, how long did it take for your eyesight to settle down enough to make it worth getting specs redone? Mine still seems to vary a bit after about 3 months but its now getting bad enough to make things difficult.
    Mods, I Hope this is the correct forum, if not please move as appropriate.
    Thanks,
    Lucky.

  3. #13
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    Quote Originally Posted by Lucky View Post
    eyesight to settle down enough to make it worth getting specs redone? Mine still seems to vary a bit after about 3 months but its now getting bad enough to make things difficult.
    Prednisone caused me massive eye issues due to pressure. I was routinely going blind for hours at a time and up to a day and a half.

    I'd get it checked right away. If the pressure on your eyes is high enough you can lose the eye. "Pop like a grape" is the phrase I heard from one of the eye specialists. That's an extreme which I was getting close to. Come to think of it, the problem started about three months into 80 mg a day of prednisone.

  4. #14
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    Lucky - 2 years ago woke up with all hearing gone in right ear - thought it was plugged and tried home remedy to unplug the thing. A bout of vertigo is what sent me to seek medical attn, they did MRI - GPA was not even a thought at this time and MRI showed nothing acute. Treated with po prednisone and got a little hearing back but not words, mostly just loud noises. ENT told me that if I had sought treatment sooner the prednisone might have worked - how to make someone feel worse than they did before - ok, I get it - my fault. I had no clue. I sought second opinion at major teaching hospital and got same result - nerve damage and that is that. I do have similar extraneous sounds in that rt ear. I was told that hearing aides do not help with nerve damage - is that your understanding also?

    Eyes - I just use cheaters, far vision ok. Seems prednisone can muck up vision also. Might want to check with eye doctor before investing in new glasses. Is it your far vision or near? I totally loss sight in left eye - it is back and I am just so grateful to be able to see and hope it stays that way!!

  5. #15
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    Belated welcome Lucky,

    Great attitude.

    Hope things go well.

  6. #16
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    Hope everyone is having a relaxing break. Birdie, yes, still getting the pressures checked regularly, will just have to see how it goes I guess. Sometimes if I get up during the night all seems dark. Other times its like I can almost see in the dark. I guess the variability confuses me. Guess it will settle down eventually. Middlesista, that's a laugh isn't it...... if you had sought treatment earlier....... and what does it take on average to even get diagnosed? Two years or more? I have zero faith in the medical system. During all this my GP at one stage asked me, while looking at my x rays, when did you break your neck?....... Years ago a falling tree branch had hit me on the head and knock me out, two broken vertebra apparently. The GP on the day inspected the X rays and had said all was fine!! One wrong twist of the neck over the next 6 weeks and I would have been a quadriplegic.... sheesh......Lucky again. I havnt done much homework on the hearing side of things as yet, however the second ENT (after telling me it was nerve damage at the time) sent me to a hearing aid "salesman" in the next office , so I don't know whether I was getting stitched up or whether they would actually be of some help. There seems to be so little experience with Wegeners around here that I don't know who to trust. In any case I decided to wait a while and see how things settle down. I am long sighted normally but during all this, I have never felt like I was going to lose my sight. It just seems to vary a lot. The hearing is a different story. I just feel it is a long slow decline so far.

  7. #17
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    Lucky, hi. I hear ya lucky, on the whole medical system, hey you're not in New Hampshire by any chance? Morons, not all I agree, but all mine morons! Oh how I wish they would do a mandatory education seminar on wegeners! And please, please remove the RARE!!!!!!!!!!!! It's a killer! Lucky, I hope this remains you're name! Mines the black cloud...... Deb.

  8. #18
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    Lucky - was told that with nerve damage hearing aide does not really help but oh how convenient that they had a hearing aide office handy !

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