Newly Diagnosed

[Meeufette]

Hello. I just received my official diagnosis of Wegner's on Wednesday November 25, 2015. It has been suspected for 11 years, but earlier tests could not be completed. I also have Sjogrens Syndrome, which is systemic and I am on meds for that. So,here I am trying to get more information from those who have Wegner's. It would also be interesting if anyone on this forum has both Sjogrens and Wegner's.

I look forward ward to meeting you here I this forum.

[debra]

Hi! I went to reply and forgot you're,name! Anyhoo,I wanted to say hello,people here r so amazing. My story I won't get in to,but to answer you're question yes I did,but weirdly only in the beginning? It resolved on its own,after about a year or two. I'm not treated as of yet,so no med was used it just resolved. I did come to an article that mentions this, as being something that happens. I had no tears,mouth was so bad. I apologize,I'm a little tired,but just wanted to tell u yes. Also to welcome u...... But sorry u have to deal with this sucky sickness! Youre not alone! Best of luck! Deb. Oh and keep posting,others will chime in,that know more than me!

[Birdie]

here I am trying to get more information from those who have Wegner's.

Welcome to our sucky sickness, sorry you're here. Ask any question you want answered and you'll get an earfull of replies.

[Middlesista]

Hi Meeufette - I am also newly diagnosed with GPA and it would be lie if if I said I would much prefer being a member of the Mickey Mouse Club.

Folks here are wonderful with lots of information , support and hope.

[debra]

Middlesista,no,not mickey mouse club! Pick another club! It's satanic! U don't want that! U have enough on you're plate..... Oh boy! I'm laughing again,but its true! Deb. Thinking about what club we could all join together,that isn't satanic!!!!!!! Yikes!

[annekat]

Welcome, Meeufette. I'm sorry about your diagnosis. I'll bet someone on here has both of those conditions, but I can't think of whom. There are also some Facebook groups for those with WG and other kinds of vasculitis and autoimmune disease, and you might get some answers there. As for Wegener's, it is kind of all over the map in the way it affects people, and in its severity, as you will find out if you stick around this forum. We'd be interested in the details of your 11 year suspected history with it, and how and where you are being treated for it. Every story is a little different, though there are common threads running through them, and we can learn from them all. Best of luck with your treatment and getting into remission. We hope to see you often here with any questions or things you'd like to share. Check out our Search function, too, for posts and threads dealing with the issues you are concerned about.

[Birdie]

Check out our Search function, too, for posts and threads dealing with the issues you are concerned about.

Searched for Sjogrens and I only found two posts from forum members with both.

http://www.wegeners-granulomatosis.c...html#post95067

http://www.wegeners-granulomatosis.c...html#post92109

And yes, I'm a bit bored but would rather be helpful than let my brain shut down and just sit here drooling.

[annekat]

Searched for Sjogrens and I only found two posts from forum members with both.

http://www.wegeners-granulomatosis.c...html#post95067

http://www.wegeners-granulomatosis.c...html#post92109

And yes, I'm a bit bored but would rather be helpful than let my brain shut down and just sit here drooling.

Well, that is good of you, and good info, and shows the value of our search function. It doesn't seem uncommon for people to have either another AI disease or another form of vasculitis besides Wegs.

[Birdie]

Well, that is good of you, and good info, and shows the value of our search function. It doesn't seem uncommon for people to have either another AI disease or another form of vasculitis besides Wegs.

I often wonder... are both a correct diagnosis or do they share symptoms which resulted in the first, not Weg, being an incorrect diagnosis. Reading hundreds of case studies will open your eyes to the percentage of incorrect diagnosis when Wegs is involved.

[annekat]

I often wonder... are both a correct diagnosis or do they share symptoms which resulted in the first, not Weg, being an incorrect diagnosis. Reading hundreds of case studies will open your eyes to the percentage of incorrect diagnosis when Wegs is involved.

I haven't researched enough to comment on this, but I have heard of people having multiple, even more than two, different autoimmune diseases, as they seem to be predisposed to them. I haven't looked up Sjogren's lately and am short on time, and I think it's a form of vasculitis, but wasn't even sure of that. I have heard of uncertain diagnoses between GPA and MPA, because they do have a lot of symptoms in common; WG is usually C-ANCA but can be P-ANCA, and for MPA it is usually the other way around. Or so I've read on here. I still need to look up Sjogren's.