New from NYC

**ms_cuppycakes** · 04-24-2014, 04:01 AM

Originally Posted by mishb

Hey Ms Cuppycakes, welcome to the forum.

No, you are not alone, even as far as Australia you will find people with WG/GPA.
It is not picky or choosy, it does not care about whether you are male or female or what religion you do or don't follow......it just is, and I'm glad that you were diagnosed very quickly.

You will have lots of questions and there is probably someone on here that will have some answers for you.
You will get frustrated and angry and sad and feel alone and sometimes just want to yell - well go for it, we are all here to listen, cry or laugh along with you.

Have you started on any treatment yet?
Have you had a sinus biopsy?

Looks like MaxD can point you in the right direction for the best specialists in your area.

We send big hugs your way and look forward to sharing your journey towards remission.

Hi mishb! Thanks for your welcoming words!

I am glad to know I am speaking with people who can empathize. I was diagnosed with limited Wegner’s.

I appreciate how you identify the emotional roller coaster it puts you on and am glad you are welcoming me to it. We can be here for each other J

No treatments started just yet. I need to see the ENT. My first ENT said “ no sinus biopsy needed she is clear and CatScan was fine” Needless to say, my #2 rheumatologist said I need a second opinion.

**ms_cuppycakes** · 04-24-2014, 04:07 AM

Originally Posted by KimH

Hi, there is Dr Lebovics an ENT on West 59th and a rhuemy, Dr Spiera . If you are in NYC these are the guys to see. You can read all about them on the website Vacsulitis Foundation. My disease is localized for the most part. A small nodule was found in my lung but has since resolved. I never knew it was there and had no lung symptoms. All the damage done is in my sinuses. I see Dr Lebovics. I have my rheumatologist up here in CT and go down there every few months. I will see Dr Spiera if Dr Lebovics feels my rheumatologist up here is off target. So far so good. Keep on top of your disease and get a doctor you feel confident in. Maybe some time we could meet up in the city. Be well and welcome to the forum.

I was diagnosed with a localized Wegner’s also. How did they find that lung nodule? I am in the process of making an appointment with Lebovics. I’d love to meet you in the city. How was your experience with Dr. Lebovics? Thanks for your welcoming words J

**KimH** · 04-24-2014, 04:41 AM

The Dr wanted to check all bases including my kidneys. Wegeners can be insidious and destroy other organs before we realize there is a serious problem. On my first visit to Dr Lebovics he wanted to see a chest CT. I had had one already. I had come prepared with all of my sinus info. He wanted to know an ANCA number, my PR 3 and CRP and ESR/sed. He took my history and then scoped my nose and throat/trach. He sent a three page letter to my rheumatologist and pulmenologist who also is my GP. Anytime I call him he returns my call quickly. I was surprised how quickly I got an appointment.

**ms_cuppycakes** · 04-24-2014, 05:13 AM

Originally Posted by KimH

The Dr wanted to check all bases including my kidneys. Wegeners can be insidious and destroy other organs before we realize there is a serious problem. On my first visit to Dr Lebovics he wanted to see a chest CT. I had had one already. I had come prepared with all of my sinus info. He wanted to know an ANCA number, my PR 3 and CRP and ESR/sed. He took my history and then scoped my nose and throat/trach. He sent a three page letter to my rheumatologist and pulmenologist who also is my GP. Anytime I call him he returns my call quickly. I was surprised how quickly I got an appointment.

Thank you so much for this information

it was helpful in knowing what to possibly expect!

**jvilner** · 04-24-2014, 05:55 AM

Makes me wIsh I could travel back to my hometown of NJ and see these drs everyone speaks so highly of. Just to make sure I'm getting proper treatment where I live now (Israel).

Sent from my iPhone using Tapatalk

**annekat** · 04-24-2014, 04:42 PM

Originally Posted by ms_cuppycakes

Hi!!!! Thank you for your reassuring reply

That website confuses me a little. I wish there was a central location of people like ENTs who specialize in Wegner's. I'm glad I can network with people who are in this together! I'm Adrianna

Hi, Adrianna. I have found the VF website confusing in places, too. The main page I look at is the one showing the specialists/consultants. However, in your case I'd definitely look into seeing Dr. Lebovics in NYC as an ENT, as Kim recommends. He is supposed to be the best. Also Dr. Speira as a rheumy.... although in a big place like NYC there are undoubtedly other good docs and I can understand you wanting easier access to a list of them who deal with WG. There was talk on here of getting together a database for the forum on good docs we've experienced wherever we live. It just takes a lot of effort and work on the part of the people who run the forum, so for now, we do a lot of recommending to each other.

**Alysia** · 04-24-2014, 05:35 PM

welcome to the forum Adriana,
you mention above about stomach problems. what were/ are your symptoms ? I have colon involvement of wg, which is rare.
don't let the term "limited wg" make your docs give you not good enough treatment. this was the mistakes my docs did with me, so my wg became more and more aggresive untill I needed rtx to control it.
take care and continue to write.

**Alysia** · 04-24-2014, 05:37 PM

Originally Posted by jvilner

Makes me wIsh I could travel back to my hometown of NJ and see these drs everyone speaks so highly of. Just to make sure I'm getting proper treatment where I live now (Israel).

Sent from my iPhone using Tapatalk

Hey Joyce, I know why you are worring. I am in the same boat. but you have this forum now. you can open a new thread, describe your symptoms and the treatment that you are getting and I am sure that the experts around can tell you all about it. this forum is the best wg-doc on the globe. trust me.