Thanks much, Pete! A week has gone fast, no problem. Wegs is pretty well under control but there are some lung issues being investigated. How is your kidney doing? I haven't been here for awhile so...
Type: Posts; User: annekat
Thanks much, Pete! A week has gone fast, no problem. Wegs is pretty well under control but there are some lung issues being investigated. How is your kidney doing? I haven't been here for awhile so...
Thanks so much, Alysia! We can always count on you. I stayed home or across the road at my sister's on my birthday. I felt safe. I have not been on the forum much and miss talking to people here. I...
Thanks to everyone for looking into this. I am full of tension about this because no one can tell us whether we really may or may not have antibodies, the test is discouraged, and there is doubt as...
Rae, I am one of the 20% who have GPA who have never had a positive result on an ANCA test. Or at least it is so minimal that it’s not considered positive. I don’t know the explanation, but it’s...
Welcome, Rae. I, too, hope you don't have GPA. But if you do, know that some have fairly mild, treatable cases, and you could be one of those. Also, it seems that you are getting it investigated...
I had similar problems as Pete did, with the ears being first to be affected by Wegener's. That was followed by 2.5 years of supposed sinus infections, allergy shots, etc., before things got so bad...
Hi, Kirk,
Thanks for the reply. I'm not sure what LPR is but can find out. In any case, the book and diet you mentioned sound very helpful if they actually got you off the nasty drugs. I hope you...
Just drinking a small amount of water with a little baking soda mixed in helps me with that coughing and burning in the esophagus. It mainly happens when I've been eating too much of the wrong things...
I'm new at this but the only category for 2 or more underlying conditions here in Washington seems to be ages 16-70, but kicks in a little later, after everyone 65 and older. That leaves out a lot of...
Hi, Masha, I've been away from the forum for awhile and just getting caught up on all the Covid posts. All I know is what it is in Washington; the first tier of Phase 1 was all kinds of people in...
Good to hear all is well, Pete! We are coming up on my 10 year anniversary in a couple of months!
Happy Thanksgiving, drz! I, too, am thankful for the forum, coming up on 10 years since diagnosis, with you and many others on my support team since day one. I need to touch base here more often,...
Welcome to the group. Sorry you have a reason to join, but it was a good move, for sure.Your case sounds pretty typical, which is a good thing, as it could be worse. But in the early stages it does...
Welcome, Ilias,
I don't know what I can add except that your situation sounds so familiar, yet different, as is often the case with WG/GPA. I started with a big ear infection at age 58, which I...
Thanks, Alysia, for letting everyone know about Daryl's passing and how much he meant to you and to Phil. Those of us who knew him on Facebook knew how, with just a few words, he could convey his...
Thanks so much, Alysia. I love you, too! It would be so amazing if we could meet someday. I feel like I know you more than online, too. I remember when you first joined the Forum, not long after I...
Hi, Gary, I just wanted to say welcome to the forum, haven't been on here much lately and just noticed your posts and the replies. I started out in 2008 with a severe ear infection in both ears, and...
Thank you, Masha! It's tomorrow, but early is always good! I have been a little spotty on here since ditching Tapatalk and getting back on the computer. Just put a shortcut on my desktop, which...
Welcome, Mandy. You’ve come to the right place. To answer drz’s question, I’m one who did know about WG/GPA before my diagnoses. But I didn’t quite think I had it. Like you, a big bilateral ear...
I have heard of people having more than one autoimmune condition, even as many as 3 or 4. I guess that would mean you could have two forms of vasculitis. I'm not as up on the technical data as some,...
Welcome, Dave! So many things sound familiar about your case and others don't, or I didn't have all the same symptoms like rash on the legs, though I knew about them from this forum. After 9 years I...
I agree! My doc in 2011, year of dx, was crappy in more ways than one, a pulmonologist with little WG experience, and I don't know that anyone else in town would have been better. Though he was a...
Hi, drz,
Yep, I’m pretty darn disorganized and have signed up for so many things it would be impossible to remember all the passwords. I have them written down on multiple pieces of paper but then...
I have tried a few times since March or April to get logged in here. Meanwhile I’ve been logging in on Tapatalk without knowing my password, since I don’t remember it, and now I have a digitally...
Wow, Pete gilders, it would be so cool if you took a road trip in the US, and maybe into Canada, too. I guess it will be awhile, with Covid 19. But when you do, if you came through my area of the...