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FallGirl
05-09-2009, 07:34 AM
Hello, i've just joined and wanted to introduce myself. I called myself FallGirl but you folks can call me Ami. I'm 26 years old and I was diagnosed with Wegener's just 3 days ago. I've been reading as much as I can about it. I have a really nice Doctor making appointments for me with specialists. I see a Rheumatologist on Monday. I found out that so far my Kidneys haven't been affected. I'm hoping we caught this in good time so I have a better chance of remission, if that's how it works, I don't know. We'll see though, I haven't even started medication yet, soon though. Not that I look forward to the side effects of Prednisone.
Anyways, I'm not the chattiest person on the block, I'm a bit shy but I'll try hard to participate and ask questions if I have them. I'm glad I found this site and I look forward to talking to all of ya's.

jola57
05-09-2009, 08:38 AM
Hi Ami, Welcome to our little family. It is good that you joined us so early in your diagnosis. Please read some of our chats to find out about symptoms, medication and doctors. I hope you have limmitted WG and get into remission soon

JennyT
05-09-2009, 09:06 AM
Hi Ami
Welcome to the club of weggies. Hope everything goes well for you
JennyT

coffeelover
05-09-2009, 09:36 AM
Welcome Ami,

I was just diagnosed in January and even though I suffer from tracheal stenosis for a long time before diagnosis. My kidneys are also not affected and when reading some of these other peoples symptoms I am thankful as you are for the "limited" diagnosis. I do hope, as you do that by catching the disease early enough, I can ward off any further complications. Thinking positive and doing it togehter will keep us alive.
We are happy you found us and feel free to ask any questions or comment. We are very non judgmental and dare I say, an interesting bunch.
Lisa Coffeelover

Sangye
05-09-2009, 11:36 AM
Hi Ami,
How awesome that you found our group so soon after diagnosis! It'll make your life much easier-- take it from someone who didn't know about it for 2.5 years!

I know you're new to the diagnosis, so I just wanted to clear up the term "limited." It really isn't used much anymore, since it implies that it's a different form of Wegs-- a more benign form. There is nothing that limits Wegs to one area or another-- just for some people it spreads more or does greater damage wherever it strikes. No one seems to know why. Since they're catching it early with you, you do have a better chance of keeping it from doing worse damage.

Keep checking in and asking for whatever you need. Lisa's right-- we're an interesting bunch!

KtheC
05-10-2009, 05:44 AM
Hey Ami,
Welcome aboard! I think you find peeps here in various stages of wegs so there will always be someone that can answer any questions you may!:)

andrew
05-11-2009, 07:15 AM
Welcome to the club! Glad your kidney's have not been affected. Sounds like you got diagnosed pretty quickly. What were your symptoms? I hope you et to remission but don't 'hang your hat on it'. Remission may never come. Concentrate instead on feeling better. I feel fine at the moment and I'm nowhere near remission :) Where has the WG affected you?

Cindy M
05-12-2009, 09:40 AM
Hi Ami, welcome to the site. I am also from Edmonton and was diagnosed in Jan/09. You will find everyone here very helpful. The side effects from preds is not pretty but it does work.

FallGirl
05-13-2009, 11:33 AM
Hey Everyone. Thanks for the warm welcomes, and sorry it's taken me so long to write back, I've had a rough couple of days.
I had my first appointment with the Rheumatologist yesterday. It went alright. They (there was a student doctor as well) asked me questions and examined me and then we discussed medication options. I ended up on 40mg of Prednisone and then it gets lowered every 2 weeks and then he'll see me in 6 weeks. He also put me on Imuran, 50mg for 2 weeks and then increased to 100mg a day. And I have to get weekly blood tests. He doesn't want to put me on Cytoxan if he can avoid it because i'm young and yeah, the whole infertility issue. So I started the meds today and i'm doing pretty good. The pain is gone which makes me so happy :D I can walk to the bathroom without it being really painful! The Doctor said it's primarily affecting my lungs right now, and my joints have been in major pain. But I'll take it one day at a time.

Sangye
05-13-2009, 12:42 PM
Very happy the pain is gone. I remember that first day it happened, too. I hope everything goes great for you!

Doug
05-13-2009, 01:29 PM
Hello, i've just joined and wanted to introduce myself. I called myself FallGirl but you folks can call me Ami. I'm 26 years old and I was diagnosed with Wegener's just 3 days ago. I've been reading as much as I can about it. I have a really nice Doctor making appointments for me with specialists. I see a Rheumatologist on Monday. I found out that so far my Kidneys haven't been affected. I'm hoping we caught this in good time so I have a better chance of remission, if that's how it works, I don't know. We'll see though, I haven't even started medication yet, soon though. Not that I look forward to the side effects of Prednisone.
Anyways, I'm not the chattiest person on the block, I'm a bit shy but I'll try hard to participate and ask questions if I have them. I'm glad I found this site and I look forward to talking to all of ya's.
"No kidney involvement" is like a gift from God. It does suggest you have the limited form, and that does look good for you! Wel;come to the forum!