New from NYC

[ms_cuppycakes]

Hello Everyone

It is so nice to have found this forum. I was just confirmed on Thursday that I have Wegner's, my journey started on Valentine's Day ( when i found out in my blood). I did not know I had anything "wrong" with me. I thought it was just stomach problems so I went to a gastrno who did extensive blood work and found the proteinase 3. Since then, I have had 2 more blood works done that confirmed it. I have had a C-Scan and chest X Ray. So, I found out it is localized in my sinuses. I have been scared as my first rheumatologist said I was not a "textbook case". My second rheumatologist ( who is more knowledgeable of the disease) said it is localized now.

Is anyone else from NYC? I'd love to hear about some DR recommendations.




Does anyone else have this localized diagnosis?

All i want is someone to say me too, so I don't feel so alone.

Thanks all! So glad i found this place

[MindyWG1999]

Hello! I've just joined this forum today as well. However I'm a Wegeners vet. I'll be celebrating my 15th year anniversary on May 19th. My Wegeners was also localized but in my lungs. Due to it taking so long 15 years ago to diagnose it did not stay localized long. It soon traveled to my nose, ears and a tiny bit to my kidneys. Luckily my kidneys were so little touched by the disease that I have absolutely no problems with them.
You are DEFINITELY not alone hun. Trust me... I felt like you do and I'll say being in groups, forum....etc like this, you'll never feel alone again.

Be the monster to the disease... don't allow Wegeners be the monster.

I hope you're feeling a little better since being diagnosed.

Cheers.
Mindy
DX age 16.

Mindy♡

[MindyWG1999]

Oh. And feel free to add me to Facebook if you want.

Mindy N MacDonald. My profile picture is the same as the one I have on here.

Mindy♡

[annekat]

Welcome to the forum, Ms. Cuppycakes! Mindy is so right that you will feel so not alone by being on this forum. You will find that there are many variations in how WG presents and everyone's case is a little different. We all learn from each other on here. It sounds like you were diagnosed quickly, and that is a very good thing. With proper treatment, you may get the disease under control before it has a chance to do a lot of damage or develop new complications. We have the disease for life, but you may go into remission for years or perhaps indefinitely. Knowing what you have and how to deal with it is the first step. Your current rheumy should be able to get you started on treatment but there are certainly WG specialists in the NYC area. I'm on the west coast so can only forward on this link from the Vasculitis Foundation showing its list of recognized specialists. You can either try to go to them or get your doc to consult with them. VF Medical Consultants

[MaxD]

Ms. Cuppycakes: I was recently diagnosed and live in NJ. I saw Dr Robert Spiera for a second opinion in NYC - he heads the vasculitis center at the Hospital for Special Surgery which is ranked among the top two for rheumatology in the country. Besides being at the forefront in treatments and research on GPA, Dr Spiera is also a thoughtful and wonderful doctor. He spent over an hour and a half with me. I will be following up with him periodically as my treatment progresses, and my local doctor will be working with him.

The other NYC doc whose name crops up often on this site is an ENT specialist, Dr Robert Lebovics. In fact, I will be seeing him this week, on Dr. Spiera's recommendation. They share over a hundred GPA patients.

Good luck on your journey with GPA.

[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.

[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.

[ms_cuppycakes]

Hi Mindy! Thank you so much for your reply! It made me tear to know I am not alone. Thanks for sharing your story

I also thank you for your words of encouragement!

I will add you on FB thanks!

[ms_cuppycakes]

Welcome to the forum, Ms. Cuppycakes! Mindy is so right that you will feel so not alone by being on this forum. You will find that there are many variations in how WG presents and everyone's case is a little different. We all learn from each other on here. It sounds like you were diagnosed quickly, and that is a very good thing. With proper treatment, you may get the disease under control before it has a chance to do a lot of damage or develop new complications. We have the disease for life, but you may go into remission for years or perhaps indefinitely. Knowing what you have and how to deal with it is the first step. Your current rheumy should be able to get you started on treatment but there are certainly WG specialists in the NYC area. I'm on the west coast so can only forward on this link from the Vasculitis Foundation showing its list of recognized specialists. You can either try to go to them or get your doc to consult with them. VF Medical Consultants

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

[ms_cuppycakes]

Ms. Cuppycakes: I was recently diagnosed and live in NJ. I saw Dr Robert Spiera for a second opinion in NYC - he heads the vasculitis center at the Hospital for Special Surgery which is ranked among the top two for rheumatology in the country. Besides being at the forefront in treatments and research on GPA, Dr Spiera is also a thoughtful and wonderful doctor. He spent over an hour and a half with me. I will be following up with him periodically as my treatment progresses, and my local doctor will be working with him.

The other NYC doc whose name crops up often on this site is an ENT specialist, Dr Robert Lebovics. In fact, I will be seeing him this week, on Dr. Spiera's recommendation. They share over a hundred GPA patients.

Good luck on your journey with GPA.

thanks for your reply!!! I am so appreciative that you are so close to me! I went to Dr. Jenny Diep ( she is in the same office as Spiera but she took my insurance). I absolutely loved her! I need to see Lebovics. I am inquiring as we speak about appointments and payments. Please let me know about your experience with Lebovics!