Autoimmunity Centers of Excellence

Has anyone ever been to an autoimmunity center of excellence? I have been looking at the web site, and considered going for an evaluation at Duke, which is one of the centers. They require a referral from a rheum. and mine doesn't think it's a good idea. He knows of no one that has gone to one of these centers.

Bella, YOu have surely read more about Duke than I, but everything I found was clinical trials and research, no patient care.

What about the John's Hopkins Sjogren's center?

I was hoping someone has been to one of these centers, especially since my dr is hesitant to refer me. The Hopkins center looks great too.

He may actually send you there, as patient care is possible, and excellent!

I went to Hopkins early on, it was the second stop on my 'fix me' trip phase. Saw the asst professor of adult ortho spine, he was wonderful, but told me that surgery would always only make me worse! Not sure if he would change his mind now.

Then saw a Neurosurgeon at Univ of MD, also asst professor, he agreed! My GP sent me to both, but keeps insisting surgery, my Rheum says NOT YET, my DC understand both! I live in limbo!

Thing is there is no guarantee this would improve anything, it seems to be a last resort these days!

BTW, the Hopkins Drs work WITH your Dr! This is a tremendous plus, they actually communicate! What a novel idea!

Thanks for your input!

I was wondering about Hopkins too, since I live in NY. How do you approach your doc about it though, without him getting his back up about it?

Very carefully, I'd say! Ask if they would have any objections about working side by side with an asst prof of Hopkins, that is who I would shoot for! No sense fooling around with anyone else, these are the ones who literally write the books!

I posted the question on the main mod site about Duke, and the answers I got back were ALL related to clinical trials, so I don't think i'ts the place for patient care, make sure to call before making the trip!

Have you considered the Mayo clinic?

More info for you,

These 'teaching hospitals' follow strict protocols for diagnosis, like you have to have these 6 things go get this diagnosis, and chances are they have far less patient care knowledge than the Doctor you are looking to replace. Teaching is not the same as practicing, but if you can get one who does both, you are getting somewhere.

With a practicing Doctor, you may not have but 5/6 of the things needed for a diagnosis, but they have done their work on you, spent time with you, and will go ahead and make the call.

This info comes from an MD/PhD who moderates another autoimmune group. He feels the practicing Doctor is the best!

Johns Hopkins is a wonderful place with top notch physicians. I did not make it into the Sjogrens Center b/c my lip biopsy showed inflammation, however not enough. But still I was treated by a neurologist, ophthalmologist and rheumatologist, The neuro was the best doctor I have ever met, unfortunately he had cancer and passed away 2 years ago, The new neurologist I was assigned to did not meet my expectations , so I switched to one in Philadelphia. I see the ophthalmologist there who is part of the Sjogrens team. I personally do not believe the rheumatology care at Hopkins is what it should be. The rheum I had was very thorough however the Fellow he had on his team was not caring or organized, actually she was kind of a mess! I had to hunt down my labs because she couldn't find them, or she would tell me info that was not mine. The final straw was she lied about a med dosage she prescribed, luckily I picked up on the error. The rheumatologist called me and while being very nice, he was making excuses for her I told him I went to Hopkins for the best care and was not getting it. At that point I told him I was going to find another physician since I should not have to be the one telling her the correct rx doses.

I do believe Hopkins is on top of the medical care chain, however just like anywhere else you may not receive the best care. I still have 5 specialists at Hopkins, the 3 hour drive is worth it. My new rheumatologist is at University of Pennsylvania and is awesome. I'm extremely happy I made the change. The best method is finding a physician who works well with you, who is available when you have questions and is honest. That's where the Fellow at Hopkins failed me, lying in my book is not acceptable. Ironically after I had all my records switched to U of P , I got a letter saying her Fellowship was finished and was moving back to California ! While I think the teaching and research hospitals are the best way to go, you still have to realize you and the doctor may not be a good fit. Good luck and don't give up the search, finding a doc or team that fits your needs is invaluable. My PCP sent me to Hopkins 5 years ago and we are both pleased with the out come. Never give up the search for perfection!

So that's my rambling for the day.Now I have to go to my pharmacy and "exchange" a prescription that was filled incorrectly. I am thankful I'm an RN and check and double check everything ! It's a little scary out there guys!

I really appreciate your information. Did you feel that Hopkins was able to help your symptoms of SS?

I went to Hopkins before any autoimmune was even imagined. It was the last rear ended car accident I was involved in that sent me there, in hopes that surgery could correct it.

My current Rheumatologist is so capable that I doubt I need Hopkins again, unless I get to the point where I will have to have surgery, but at the time, I was told surgery would only ever make me worse! That opinion may change though, I have a GP that says surgery NOW, a Rheum that says not yet, and a Chiropractor who can see both sides!