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Sangye
06-29-2010, 05:31 AM
Let's start a thread with the names of great docs. I don't think we need to put the VF docs, but you can if you like.

If a rheumy isn't a VF doc but knows Wegs very well, please list them. It would be helpful to know approximately how many Weggies s/he has treated.

Also, list other specialists you've discovered in your travels.

I'd like to keep this thread on topic as much as possible so that it can remain a good resource for newcomers and those of us looking for specialists all over the world.

Jack
06-29-2010, 06:11 AM
Prof Caroline Savage
Prof Paul Bacon
Dr Paul Cockwell

All part of a vasculitis research team at the Queen Elizabeth Hospital, Birmingham.

The team have published lots of papers and seem to have a world reputation. The BVAS system for diagnosing Wegener's was developed here.

pberggren1
06-29-2010, 06:37 AM
Jack, what is the name of the doc that cared for you that is now reitred? I think you said that he treated you for a number of years and knew Wegs fairly well.

Jack
06-29-2010, 07:03 AM
That was Dr. Adu. He was part of the same team. Oddly, they seem to be mostly Renal people, but I think Bacon is Rhumatology.

This is him - http://www.era-edta.org/adu.htm a very approachable doctor. :)

JanW
06-29-2010, 12:40 PM
My ENT, Dr. Robert Lebovics, Manhattan. Expert on ENT WG issues. He was the clinical director under Drs. Langford and Hoffman (now at CC) at the National Institutes of Health.

elephant
06-29-2010, 01:33 PM
Wegeners specialist - Dr Carol Langford at the Cleveland clinic in Ohio.

Sangye
06-29-2010, 11:33 PM
Wegs rheumy -- Dr Philip Seo, Johns Hopkins
Neuro-Opthalmologist-- Dr Prem Subramanian, JHU; specializes in pseudotumor cerebri (elevated intracranial pressure)
Dermatologist -- Dr Walter Giblin in Rockville, Maryland
Ocular immunologist-- Dr James Dunn, JHU; specializes in autoimmune diseases; only saw him once because I don't have Wegs eye involvement

ranpar01
06-30-2010, 07:16 AM
Sharon Chung, MD (UC San Francisco)
She is a VF Rheumatologist, one of the few in Northern California.

Dr. Pedro Ruiz at California Pacific Medical Center is also very good and sees a lot of WG patients. He is not listed as as VF doc. When he treated my Dad I aksed him how many WG patients he has treated, and he indicated that he had seen several hundred. For comparison - our local doc had seen two, and that was counting my Dad... so we drive to SF now.

Tim Roberts
07-07-2010, 12:12 AM
As I live in St. Cloud, Minnesota (which is about 2 1/2 hours from Rochester, MN) I would really like to know the name of Wegener's experts at the Mayo Clinic in Rochester. Anyone have a name? Any help will be greatly appreciated!

elephant
07-07-2010, 12:42 AM
I recently looked up one in Mayo ( Minnesota) Dr Eric Matteson 507-284-8450. Don't know anything about him.

pberggren1
07-07-2010, 03:17 AM
I beleive Eric Matteson is a Rheumatologist. I know that Ulrich Specks is in Pulmonary and Critical Care and his number is 507-284-2964. Eric Matteson's number is 507-284-8450.

I hope this helps you Tim.

Tim Roberts
07-07-2010, 04:34 AM
It does and I appreciate the help. Does anyone have any experience with either of this doctors at the Mayo Clinic in Rochester? I know that everyone on the forum is great about recommending an experienced Wegener's specialist and because I live in Minnesota I would really like to find someone who is that specialist. My rheumatologist in St. Cloud is very good but has a very limited knowledge and experience base with Wegener's. Thanks for the help.

pberggren1
07-07-2010, 06:03 AM
I was going to see Dr. Specks but have now found a Wegs Specialist right in my own town. I know that Specks is one of the best out there.

Tim Roberts
07-07-2010, 06:12 AM
Thank you!

Hammy8241
03-17-2011, 05:57 AM
Is there any recommended WG specialists around LOS ANGELES CA?

Just asking as I'm popping over a for a couple of weeks and would like a security blanket - Thanks

pberggren1
03-17-2011, 06:02 AM
Is there any recommended WG specialists around LOS ANGELES CA?

Just asking as I'm popping over a for a couple of weeks and would like a security blanket - Thanks

I think a public warning anouncement is in order then.:wink1:

Hammy8241
03-17-2011, 06:10 AM
I think a public warning anouncement is in order then.:wink1:


Shussssh! It's going to be tough enough getting through customs with a suitcase full of drugs and syringes:w00t:lol

DEE
03-17-2011, 06:19 AM
Hope you leaving room in the suitcase for the jellybabies :flapper:

Hammy8241
03-17-2011, 06:27 AM
Hope you leaving room in the suitcase for the jellybabies :flapper:

Not sure America is ready for Jellybabies Dee - Knowing 'Homeland security' (customs) they would not let them into the country unless each one had a passport.:rolleyes1:

Please . please do not pass this on to them as I'll never be allowed into the country, thank you. (Phil - this means you too!) :thumbup:

Sangye
03-17-2011, 09:09 AM
D'oh! Too late. I already emailed them. You're gonna need to cough up itteh bitteh passports for each one. :w00t: