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Any experience: Johns Hopkins, Mayo

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Lupus
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Posted 3/28/2013 7:43 PM (GMT 0)
Hi Everyone. My internist suggested I consult with one of these institutions when either my rheumy is at a loss as to what else I can try or I just become too frustrated. I'm not even close to considering this, but I thought I would ask if any of you have been to these facilities. Love, Butterflake
Posted 3/28/2013 8:09 PM (GMT 0)
I've heard they are the best, but no personal experience.
Posted 3/28/2013 9:21 PM (GMT 0)
I went to Mayo clinic last year and wasn't impressed at all. At first all was good because they ran a lot of tests and did then quickly but when it came down to an actual diagnosis, they hemmed and hawed. I finally ended up going back to my old doctors and bringing the records from Mayo with me and letting him diagnose me.

Testing done there said that I had Pulmonary Hypertension but they never told me that. They said I had high blood pressure and put me on meds. My cardiologist said that was totally unacceptable.

Well, anyway that was the gist of my experience Mayo. My rheumy said she had a bad experience there also.

Of course, the Mayo in your area may be better.

Hopes this helps.

Mary Ann
Posted 3/30/2013 5:16 PM (GMT 0)
Thanks for the input Mary Ann. I read online that Johns Hopkins has a lupus center, but Mayo only has specialists for lupus nephritis.  Mayo's sight also said they have many nephrologists who sub-specialize making them an outstanding place for lupus nephritis patients. Well, I don't have lupus nephritis and your input just validates my conclusion not to go to Mayo. If I ever go out of state, I'll go to Johns Hopkins which has an actual clinic just for lupus. Thank you so much for your reply. Love, Donna
Posted 3/31/2013 1:32 AM (GMT 0)
 

Hi Butterflake,

     If you are ever on the west coast, there are Lupus Clinics at both Stanford and UC San Francisco.  I have no experience with either of them, but had strongly considered a consult when I needed a second opinion.

Laura

Posted 3/31/2013 4:02 AM (GMT 0)
Hey Donna:

I'm sorry that you are having such a hard time controlling your lupus. I certainly can relate to that. My Drs are totally stumped as to what to do to help me now.

I was seen back in 2006 at Johns Hopkins, I hate to say it, but I was less than impressed with the Dr I had. I'm such a tough case I leave just about every Dr scratching their heads. This one basically blew me off, and suggested maybe everything was in my head. You know what I did when I left his office? Never returned and never will.

I know I'm a very complicated case and have so many different Drs I need an assistant to keep them straight for me LOL.

Who knows maybe you'll be more straight forward for them and get great care. If you come up this way let me know, as I don't live far from the Johns Hopkins campus.

Hope you are feeling better and hang in there.

Love,
Barbara
Posted 4/8/2013 6:52 PM (GMT 0)
I saw Dr.Petri at Hopkins for a long time. Her bedside manner can be a bit cold, but if you are a complicated case she should be able to help. She is one of the top Doctors in the country when it comes to Lupus, worth a shot.
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