Hello!- 21 yr old with WG

[marta]

Welcome to the group Lauren,

This is by far the best place I have found to get support, information and encouragement on-line about Wegener's. This forum is a treasure trove of everything WG. Sounds like you were taken for quite a ride before diagnosis. Whoa! I'm very happy that you're on the other side of that, and the knowledge that you wont be there again - unsure of what is causing all the problems - is at least one positive. Now that you know the beast to overcome, the battle seems a little more fightable... or at least it felt that way for me.

I feel the same way about the ENT's. My experience was that there was definitely chips on shoulders in that department, but I have to say he's come around 180 degrees since I got diagnosed and I think he might feel a little guilty for blowing me off the way he did. Now he spends a ton of time with me each visit, and when I'm in the city, they'll book me in at a moment's notice. Sounds like you have a good team, and if they're willing to consult with the Weg Specialists then bravo. I think that this disease requires the treatment from someone with significant experience as it's just as much an art as it is a science as there is so much variation within the patient population and disease manifestation that a regular rheumy who's just looking at the science aint gonna do the job - I speak on that one from experience too. I had to fire my old doc and found a new one who is an absolute godsend.

Best of luck to you and your fiance.

[NicShaf]

Lauren,
I've also had trouble finding a good ENT, they just don't seem as familar or educated in Wegs overall. But I have a good Rheumy and Pulmonary doc, so I'm confident in my team. It sounds like you have a good team now, that is great news.
My husband and I had concerns about fertility when I was first diagnosed. I'm 27 now, 26 at dx. There are quite a few threads on here with members who are trying to preserve their fertility to have children of their own. I chose to be treated with CTX, and my husband and I talk about adoption a lot. I look at it as an opportunity to change a childs life in a wonderful way, one that I wouldn't have considered before Wegs. I hope you and your fiance can find the good in it as well

[elephant]

Lauren, you really had it rough, so glad you make it to this forum. I have two beautiful adopted children and I feel so blessed to have them. In your own time,I hope you see a wegeners specialist.

[Rini]

Hi! nice 2 meet you! I am one of the other young newbies. This place is full of experienced, kind people that know a lot. It sounds like you went through a lot. I hope things are truly looking better and I hope It keeps up!