New from NYC

[ms_cuppycakes]

Hello Everyone :hug3:

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 (http://www.vasculitisfoundation.org/mcm_resources/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 (http://www.vasculitisfoundation.org/mcm_resources/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!

[ms_cuppycakes]

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]

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]

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]

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]

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).


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[annekat]

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]

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]

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).


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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.

[KimH]

Dr Lebovics is listed on the VF consultant page.Do you need his phone number? His office is by Columbus Circle.

[jvilner]

Thanks KimH but I googled him already. I'm contemplating sending an email.


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[MaxD]

I had to postpone my appointment with Dr. Lebovics, but I will be sure to write after I see him in two weeks. Glad to hear you saw Dr. Diep; I imagine the docs work closely together and you are in good hands.


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!