introducting myself

[Sangye]

Hi Makabe, welcome to the group! (And welcome to Nancy, too!) I hope you can get a clear diagnosis soon, but like you said sinus biopsies are often inaccurate or inconclusive. The most important thing is to get a doctor who really knows Wegs-- not just a Wegs rheumy, but also a Wegs ENT, etc.... Since you're in Pennsylvania I suggest seeking treatment at JHU (or Cleveland Clinic, whichever is closest).

Beware of the labels "mild" or "limited." Wegs can do anything it wants without warning, which is why you need to have great docs lined up before/in case anything heads south. The husband of one of our members (Stephanie) went from sinus-only involvement to massive, life-threatening disease in just 2 weeks.

[vdub]

Hi, Makabe and Nancy! Yeah! Looks like the forum might be back on track after a little vacation.

My situation also started with sinuses. My ENT wanted to do surgery to open up my sinus channels so they could get more air. I think that surgery was number 4 or 5, so I was no to keen on getting it done and was less than optimistic that it would do anything for me. I went ahead with it anyway -- I thought, what the heck, can't hurt. As it turns out, it was the absolute best thing that could happen. Now when I'm having sinus issues, I can sniff a little an feel air go all the way through my sinus. I can actually go to sleep at night and breath thru my nose. Best surgery I've had......

[Al]

Welcome, Makabe, and Hi, Nancy! And thanks to both of you for being such good sports about being involved with this scurvy crew!

"WG" actually covers a whole range of diseases, Makabe. Some, in fact, are ANCA negative, or mostly negative. The variables are: granulomatous inflammation, vasculitis, and presence of ANCA. Along each dimension, there is wide variation. You are indeed luckier than many, as you do not have lung or kidney involvement. Still, it is a nasty disease, and nothing to sneeze at (so to speak), in all cases. It sounds like you are in pretty good hands. Keep us apprised about your progress!

Al

[Dirty Don]

being such good sports about being involved with this scurvy crew!Al

Arrrggghhh, matey...you 'cusin' me of scurvy?! Arrrggghh...sinuses? yes. lungs, maybe. kidneys, gimme a pint! but, scurvy? you pirate!!!!!! LOL...

[Al]

Arrrggghhh, matey...you 'cusin' me of scurvy?! Arrrggghh...sinuses? yes. lungs, maybe. kidneys, gimme a pint! but, scurvy? you pirate!!!!!! LOL...

To be more precise, I guess rickets would be a closer side effect of WG than scurvy. Also, my beard is far from black these days. But you do make me laugh, this groggy morning--Arr-Arr-Arr....

Al

[annekat]

Welcome, Nancy and Makabe. I started with one horrendous ear infection followed by a couple of years of recurring sinus infections, hearing problems, and off and on joint pain, then some bad lung involvement which led to the suspicion of Wegener's, which was confirmed by a nasal septum biopsy. But in my case, just an occasional fever during the bad lung stage, not a protracted period of fevers at all. And like some lucky others, no kidney involvement so far. Lungs cleared up after 2 or 3 months of Cytoxan and high dose prednisone, now 8 months later tapering both and still dealing with sinus and hearing issues, but much improved. A little joint pain creeping back in but mainly in joints that I use a lot as opposed to random or roving pain. Every case of Wegs appears to be a little different!

Anne

[mishb]

I also would like to wish you both (Makabe and Nancy) a big hello and welcome........and today a very happy christmas.

I started out with roving joint pain and then sinus infections that wouldn't go away which then lead to bright red eyes and deafness in my right ear. No lungs or kidney trouble.
I had the sinus biopsy and one very small granuloma was found and thus my diagnosis of WG. I was on pred only until an official diagnosis and then put on to MTX as well.

Take care of yourselves and I hope 2012 will be a much happier, healthy one for you

[Chris G]

Welcome Makabe & Nancy! My wg is similar to yours makabe. Ears, sinuses (w bad sinus headaches), nose, eyes, throat, and of course terrible fatigue. I've had wg for at least 4 years, probably longer - so far no lung or kidney involvement. Fingers crossed, it will never happen. Good luck to you !!

[Nancy-S]

Thanks! Merry Christmas to you, too!

We all present differently, but so much more alike then is realized. Many of you can (already have...actually) write my story , without asking me a single question. I'm glad to have your examples of strength, and hope I can be half as brave.

Thanks for the warm welcome. And thanks to Makabe for letting me share your thread.

[NicShaf]

Welcome to the group! I hope your docs can find some more answers for you soon, and you can be on your way to recovery.
As a couple people said, biopsies often come back inconclusive, especially sinus ones. I had lung and sinus done, and both came back inconclusive; but I was still diagnosed with Wegs based on the clinical evidence.
Adjusting and accepting the diagnosis if difficult at first, but it will get easier with time. Hang in there...and ask questions whenever you have them, the people on this forum are some of the most knowledgeable around, they'll help you though the forest