Those with Sinus involment

**pberggren1** · 07-31-2010, 06:53 AM

Most of us on here don't have Wegs Specialists.

**Jack** · 07-31-2010, 07:24 AM

That might make an interesting Poll - I'll start one here - http://www.wegeners-granulomatosis.c...pecialist.html

**misskay** · 07-31-2010, 10:19 AM

just reread my earlier post. I sounded a little defensive... didn't mean for it to come out that way. Hope I didn't offend anyone. I guess with all the talk about going to the big centers and dealing with WG specialists... had me thinking thats the route most of you has taken. Apologies where needed folks.

**Sangye** · 07-31-2010, 11:00 AM

Misskay, no apologies necessary. I understand if you can't get to a major center, but there is no reason in the world why you can't have a VF specialist consult for free with your docs. I just don't think you're getting proper care.

When I was with my original pulmy who dx'ed me and saved my life, I also thought it was great. Then things took a turn for the worse. Then when I was at Mayo AZ I thought it was great. If I hadn't moved to Maryland and found JHU, I would have limped along with very substandard care thinking it was just fine. I never would have survived last year's flare without a Wegs specialist. And in retrospect, my Wegs specialist can see that my original care was not proper-- I never should have been kept on ctx for 8 months, as it was too toxic to my bone marrow.

Please trust me. It costs you nothing but the time it takes to ask your rheumy.

**elephant** · 07-31-2010, 11:45 AM

Misskay, you are fine. I waited over a year to see a Wegeners Specialist because I didn't know that there was such a specialist. Plus at the time I had two small children and could not bear thinking about driving far, far away to see a WG specialist. But when I had a wedge cut out of my lung, and symptoms were worsening, I knew I had to go. I called my mom who lives in Chicago and she flew down to watch my kids so that me and my husband could go to the Cleveland Clinic.
Just want the best for everyone on this forum. You guys are family!

**JanW** · 07-31-2010, 11:51 PM

on the iPhone so keeping it brief. I am at the conference now. There is a huge reluctance even among people who would come to a conference like this to "abandon" the hometown rheumy who saved their life but the people here who are visiting the doc's who are speaking are just at a totally different level when talking about their docs and the care they receive. There are lots of horror stories here. Food for thought.