Cant wait for the day i have no crusting, i will go out and celebrate!
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
I hope you will, Freaky!
@Malin:
I never had the kind of 'big' crusting as described by some on this thread.
I just had small spots of blood in my tissue, when I blowed my nose,
my muccous membrane was very dry, and I had little wounds in my nose,
with dried-up tissue, that hurt when I tried to remove them.
It's gross, but indeed it is good to have a place to talk about these nasty things.
Ohmygoodness.... I was diagnosed last november, and before i started treatment i would have that! I had no idea it was becuase of the wegeners though! WOW that explains why i don't have it anymore lol
Lucky you Ginger!
I had 3 years trying to convince my ENT's that my crusting was more than "just in my head" or "something you'll just have to live with".
The day i'm free of crusting drinks are on me!
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
Ginger, do you mean your docs have never told you about that? If so, I'm appalled. It's a "classic" sign of Wegs, that any doctor--even those who are totally unskilled in treating Wegs-- would recognize.
A classic case of "Ginger" not listening to all that is being said by her doctors. Her original symptoms were sinus and joint problems both of which disappeared quickly once the meds were started so it may be that she/we are so focused on the kidney issue that everything else is secondary at this time. She was thoroughly checked over at the Nephrology/Rheumotology clinic every week while doing her lab work for the first two months. That included nose, throat, eyes, ears, joints, nerves, skin, etc. They'd check for any form of facial pain that would indicate inflammation. "Ginger" just happens to be one of the lucky ones where the meds eliminated all symptoms rather quickly -- except the kidney damage -- so she is now remembering the old symptoms before treatment.
In her defense -- it is a lot for a 14-15 year old to soak in while being as sick as she was. I think she was listening more to what the meds could do to her -- moon face, weight gain, fertility issues, cancer risks, etc.
Trust me -- I don't think anyone could receive better treatment/care than she has.
This is going to be interesting -- a mother and daughter on the forum together!
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