Still accepting new members?

[Lucky]

Hi all,
Do I need a nomination from another member?..... How long is the probationary period?...... Ha Ha, just kidding.
Have been lurking here for a few months, hope you don't hold that against me....... and am now getting my head around the diagnosis, treatment etc.
Your site has already helped considerably with my understanding of all things Wegeners.
Looking back, I went through about 2 years of fatigue and unbelievable joint pain. Couldn't even stand up after dinner in the evenings.
Eventually sinus issues surfaced about the same time as a cough started. Guess you all know that story. About six months later I was going deaf and also scleritis showed up at a time when my GP was on holidays.
Nothing like letter openers being driven into your eyes is there?
I went to my optician who sent me to an Opthamologist, boy was that a lucky break. He was on to it almost immediately.
The Rheumatologist he sent me to was also straight on to it. After lengthy discussion he asked me to begin treatment immediately. The next week or so I seemed to visit every machine imaginable for lungs, liver, kidneys, brain, skeleton etc.
I guess you have all been there.
Apart from the things mentioned above, lung involvement is the only extra so far. Once again I am lucky.
Anyway Im on Methotrexate and Prednisolone and settling into "the new normal". I cant work now so getting used to that as well. Only putting in 3-4 hours maximum of almost "normal" work (at home now) for me is frustrating, but obviously a lot of you would swap me any day. At least the vegie garden is looking the best it ever has!
Well that's about it for now. Will have a couple of questions for the "experts" down the track a bit.
Thanks for listening.

The eternal optimist.
Lucky.

[vdub]

Lucky? Yeah, I once had a 3-legged dog I named Lucky.... :-) Welcome to the forum!

[woz]

Welcome Lucky, sounds like you are on top of most things, or at least close, my Opthamologist, was the one who found it first, only just in front of my Rheumy. My Rheumy is the bestest, as soon as I saw her, she looked into my deep red eyes and told me what I Didn't want to hear( I know what you have, wegs), she then rang her husband who was in surgery(he is the bestest ENT surgeon) and told him she had another job for the afternoon whilst he was in surgery, raced me down to the hospital and admitted me, later that day the inside of my nose was rebuilt, so I consider myself to be very lucky, I'm on daily azathioprine, probable will be on it for some time, unless a magic cure is found, but SUCH IS LIFE........

Hope you get on top of yours Quickly, all the best

Regards Woz....

[Birdie]

The eternal optimist.
Lucky.

If nothing else is going your way at least you have the right attitude. Hang on to that, it may come in very handy even if your Weg troubles are minimal.

[annekat]

Welcome to the forum, Lucky. I lurked for awhile too... feels good, doesn't it, to come out in the open. This is a warm and welcoming community with lots of info and interesting stories, since Wegs is a little, or even a lot, different for everyone, as you know from your previous reading here. I hope we hear lots more from you, that your "'new normal" gets even better and better, and that you are declared in remission before too long. Thanks for your optimistic attitude.

[debra]

Lucky,hi.... The letter opener in the eye! Yes.... Don't feel bad for lurking three months,I lurked for over three years.... Finally came out,although I wish I hadn't needed to... U have a great attitude..... Take care of u, and you're garden.... Deb.

[Pete]

Lucky? Yeah, I once had a 3-legged dog I named Lucky.... :-) Welcome to the forum!
Was he blind and deaf too???

[Pete]

Welcome to the club, Lucky!! Hope your health improves and that your "new normal" is close to your "old normal".

[Lucky]

Hi all, thanks for the welcomes. Have been getting up to speed with the knowledge from older posts. Some great experience here that's for sure. It has saved me a few questions. I wont be here daily as some, but will drop in regularly as time permits. Hope all have a great holiday break. Keep the stress levels to a minimum. Lucky.

[Middlesista]

Thanks for sharing and un-lurking Lucky. I also had the letter opener/ice pick in the eye syndrome and loss my vision in one eye on and off a few times and also the hearing went about 2 years ago as well as a few other symptoms. The eye doc was also the person that forged ahead trying to get a diagnosis and much to my dismay her thoughts on vasculitis were correct - but at least we started treatment.

Keep on keeping on -

[mishb]

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 .......

[Lucky]

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.

[Birdie]

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.

[Middlesista]

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!!

[Aneinu]

Belated welcome Lucky,

Great attitude.

Hope things go well.

[Lucky]

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.

[debra]

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.

[Middlesista]

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 !