Sunday, August 12, 2012

Enquiring Sjoggies Want to know

Reader Jody recently asked this darned good question:

"I'm curious if you or any of your readers have gone to one of the Sjögrens Centers, such as Johns Hopkins, Cleveland Clinic or the University of CA, San Francisco?
I'm sure my internist or rheumatologist would write a referral for me, if necessary, but hard to know where to go."
I told her that I hadn't, but that I would put this question out on a post.

Have you been seen at a specific Sjogren's center? Was it a good experience?

Which brings up an even broader topic: How DO you know where to go for good care, even if it isn't at a specialty clinic?

Tell us.


Leslie at SugarAndSpiceADK. said...

Where to begin....I went from upstate NY to Johns Hopkins in Baltimore to see the famed Dr Julius Birnbaum and his team....absolutely a HUGE waste of time...he was very rude, rushed--I maybe saw him for 10 minutes, period. His staff was better..ran every possible test on me known to man. When I called back in a month for results, which I was instructed to do, not only did Dr. Birnbaum not remember anything about me, but he gave me someone else's lab reports! In the end, I learned no more from seeing him about my Sjogren's than I did from my own small town rheumatologist...and ended up paying over $2500 that my insurance wouldn't cover.

Michelle said...

I am lucky in that my Rheumatologist treats my Sjogrens even though I am sero-negative. I don't feel the need at this time to go to a big medical center. If I feel the need, I'll go!

Jody said...

Sorry you had such a bad experience.
What tests did they run on you?
I'm wondering what other tests I should have, I'm sero-negative at this point, and my rheumatologist doesn't recognize some of my symptoms. However, from this blog and other reading, many Sjöggies describe exactly what I'm feeling.
Thank you, Julia and your readers for your help & advice!

Kelly said...

An excellent question. One I've been struggling with myself. No Rheumatologists in my area are worth seeing according to a friend who has Sjogren's with a definitive dx and my primary care doc, both.

I live within driving distance of UCSF but don't know if they'd even see me since I'm sero-negative. Still in wait-and-see mode wondering what's the right thing to do. I would love to hear from someone who has actually been to UCSF. I could probably get a referral from my primary care doc. Anyone been there?

sheryl said...

I am positive for ANA and SS-A. I went to UCSF, not for treatment, but to get on the Sjogren's Registry. They did a variety of tests, including a lip biopsy. According to their very strict criteria, I have 'signs and symptoms' of Sjogren's, but they would not classify my as definitely having it. They did have me come back 2 years later for a follow up, and I got the same results. They did tell me that anywhere else, I would have been told I did have Sjogren's, but for research purposes, they have to be very strict about how they classify it. Everyone there was very friendly, and at the same time, professional.
If you go to be included in the registry, it does not cost anything. If you have been diagnosed as having probable Sjogren's, even if you are sero-negative, they should take you, since there are other things they look at besides blood tests. If you are going to be diagnosed or treated, then you would have to pay, but it shouldn't matter that you are sero-negative.