SS ghuru Dr.s?

[212hjet]

First of all...thanks to all of you who post and help others on this site.  I'm pretty new here, but not to SS and many of its manifestations in the Secondary stage.
I'm very frustrated and would like to find an SS specialists who can help me to understand and work with all these manifestations and who can help me more than the normal rhumetologist who has a few SS and other Auto Immune patients?  I went to see Dr. Fox in San Diego years ago while in the Primary stage, but would like the names of others who are very involved with all aspects of care for patients with several Secondary SS aspects.
Thanks again,
Richard

[anita]

Hi Richard,

Welcome!!  You don't say where you're from, but since you saw Dr. Fox in San Diego, I'm guessing you're located on the west coast.  Therefore, I may be of no help to you.  My favorite guru is Dr. Birnbaum at Johns Hopkins in Baltimore.  He is the only doctor in the nation to be both formally trained in rheumatology and neurology...and specializes solely in the neuro manifestations of rheumatological disease with a focus on Sjogren's.  He's at the Sjogrne's Center at JH's Bayview campus.  The link below will tell you a bit more about him and what the center has to offer.

http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html

it's a little time consuming to get in, but well worth the effort.

Good luck.

Anita

[FF Jo]

  Hi
I been newly diagnosed and was also needed to see if anyone know of some good Dr.s  I live in Houston the meca for every other illness.  I have not has much luck finding a doc that specializes in sjs or any other ai.  A rhuemy or nuro would be great.  Thanks for any info.
Jo

[Patze]

Hi Richard,

Let me also welcome you to the SJS World and family!  Please look around the board as there are tons of topics to be had, and scads of information oh me oh my!  

Now there are several excellent doctors out there, and what part of the country are you zeroing in on?  It would help as a member might be able to give you a name to help you in your search.

Again, welcome, and I hope to chat with you soon!

Take care of yourself -

Patze

[212hjet]

Thank you Anita for the information.  I truly appreciate it.  At this stage in my life and health a trip by plane is the same wherever it is in the US.  I live in Idaho so any trip except to Seattle is a bit time consuming.  I was hoping to get a few more suggestions so that I could do my research and perhaps select one, so if anyone else has an addition, please do so.
I will do my research on Dr. Birnbaum and the Clinic.
Jo:  Good luck to you in your search.  You might check with the SS Foundation to see if they have members in the Houston area who would give you some ideas.  I am currently getting ready to move to Boise and am doing the same there as all my Dr.s are in the Spokane, Wa. area.....changing all your Docs is not a pleasant task.
You might also start a new thread with that title and you would likely get more views and hopefully what you need.
Take good care all,
Richard

[evamarie]

Can anyone recommend a specialist in the New York area

[binx]

dear richard,

if you are willing to fly, i recommend dr. carteron in san francisco.  she co-wrote a book on sjogren's called "a body out of balance" and spoke at the most recent sjogren's patient conference in the san francisco bay area.  in my opinion, she is not only a brilliant physician, but also an incredibly compassionate one.  i have never felt more heard or validated by any other doctor in my entire life.

for more information about her, check out sjogrensforum.com

getting an appointment can be challenging, but it is well worth it.

good luck,
binx