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.com/forum/new-member-introductions/4651-poconos-pa-4.html#post95067

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4440-taking-step-find-out-if-i-have-wegs.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.com/forum/new-member-introductions/4651-poconos-pa-4.html#post95067

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4440-taking-step-find-out-if-i-have-wegs.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.

[debra]

Birdie! I agree with u. I also think wg is way more common then they know. How many people r left with kidney failure for example,but what exactly led to the failure? Or hart. Or lungs,ect... A doctor who doesn't know this disease,and most don't will never think to look for it. How can u look for something u dont know exists! Hey guys,why am i in caps? Just noticed,looks like i'm shouting! Oh boy this cell internet is a trip... Deb. Wondering why i can't shut off my caps button!

[Debbie C]

Welcome to the group of sickies !! I was just at the ent today and he asked if I had any other thing going now like Sjogrens ( sp? ) or RA. he said it wasn't unusual to get other diseases. GREAT that gives us all something to think about. Doesn't vdub have more than one thing happening with him ??? I know hes got a lot happening but I think he also has another rare disease.

[annekat]

Welcome to the group of sickies !! I was just at the ent today and he asked if I had any other thing going now like Sjogrens ( sp? ) or RA. he said it wasn't unusual to get other diseases. GREAT that gives us all something to think about. Doesn't vdub have more than one thing happening with him ??? I know hes got a lot happening but I think he also has another rare disease. I know that Michelle has RA in addition to WG. Our friend Heather McLemore, who lost her battle recently, had WG, Lupus, RA, and Behcet's, and probably more, and died most likely of her heart condition which could have been related to any or all of those. I agree with Deb from NH that WG is more common than we know or than is generally recognized. We keep hearing how rare it is, yet more and more people show up on the forum and more and more people I mention it to have heard of it. Apart from anyone on here or Facebook, I know at least 3 people in different parts of the country who have a friend or relative with it. And I SO believe what you say, Birdie, about the hundreds or thousands of misdiagnoses. I was one of them, dx'ed at age 58 with chronic recurring sinus and ear infections, which I'd never had in my life! If they'd only look back at a patient's history and see what isn't typical for them, it might give a few clues. A gigantic atypical ear infection at the start of Wegs is one I've heard over and over. I do have a history of allergies, so it was easy to pin the sinus stuff on that, even though my past problems were mostly asthma. Me, me, me! The point is I have heard similar stories over and over again on here and in the Facebook groups. Some of the misdiagnoses have been for pretty serious stuff, like TB or whatever. Think of all the people throughout history who've died of WG without ever knowing a thing about it. Well, it's been said before, and you get the point.

[debra]

Just me as usual apologizing for the typos... Heart not hart! My endo told me years ago,that when one autoimmune disease comes its not unusual to have that one gather a few friends together... I was very healthy before this,not even a cold. Flu,at thirteen and never again. No ear aches no sinus issues,wow I'm sad just typing this! I do have autoimmune thyroid though,called hashimoto thyroiditis,wow sounds like the number four special at a Chinese restaurant! It has gotton more wacky since Wg,kinda like me... I believe Wg is not rare at all,just not diagnosed.... Deb. Now craving Chinese food...

[Birdie]

And I SO believe what you say, Birdie, about the hundreds or thousands of misdiagnoses.

Doctors are insufficiently focused and suffer from listening disorders, patients are too ignorant or timid to make a fuss, bad combination.

I made a fuss and kept fussing until I got the right doctor, a periodontist of all things, to really give it all he had to figure it out.

It's a fussy sucky sickness.

[Birdie]

Now craving Chinese food...

You'll be hungry again in an hour.

[debra]

Birdie! I'm stalking u! Birdie,don't ever change! So funny.. yes listening disorders is an awesome description! Deb. Wondering why I feel compelled to sign my name,when its on the top anyway......

[Pugdog]

Hello and welcome. I am new here as well. I was diagnosed in 1994 with WG. Seems to be a good group here. Good luck and stay positive!!

[Middlesista]

Correct diagnosis to support WEG or that it is incorrect diagnosis Birdie?