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Thread: Recommendations for rheumatologist at Mayo Rochester

  1. #11
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    Mayo should run you about $1000 for consult and some bloods to help the docs see things better. Mayo adds a fee to Medicare (up front money I guess), but does take it. Anything your insurance can pitch in is helpful at that point. Keep at it!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  2. #12
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    Quote Originally Posted by godgirl View Post
    So, after 6 million people saying I need to go to Mayo, I might be caving in to the pressure...

    My insurance will pay part, but not all of it. That's been the main reason I wasn't going. But I have family that said they'd help out with bills if I need it. Made me tear up!

    Anyway, I know people put Dr. Specks out there a lot. When I went to Mayo's website, he's a pulmonologist. I don't have lung involvement - just sinus at this point.

    So, those of you who have been at Mayo, who would you suggest?

    Jen
    Don't cave... if you are getting good care where you are. I went to Mayo for second opinion. I saw a Kidney specialist since I have issues there. Personally I found them no better than my Current Dr. who is the best. I thought Mayo was going to be this wonderful great place full of experts that know so much more than others. I think it is just another large group that spend too much on the surroundings. Don't get me wrong they knew about WG but no more than mine does. I am using my Kidney specialist as my main Dr. and am happy with him. My insurance did pay for my visit but I saw the bill and the office part of the visit was less than $500 I think. Not sure what issues you are having but I can give you the name of a good Kidney Specialist. Good luck!!!

  3. #13
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    Not to be contrary loisann, but Mayo is about research and organization and accessibility, not necessarily the best docs. Mayo's surroundings are funded by donors, not our bills. I access my bloods, docs, almost everything immediately with them. If I have a problem, no problem, they are there for me. For example, Banner in AZ is a great hospital system, and the docs they use/or use them are as good as there are...they saved my life. But they didn't know what was going on, so...THEY went to Mayo...Mayo pinned it down within 24 hours, and I ended up there. Both saved my life, but Mayo has kept me going forward. If one finds a better doc, great...your chances are better with Mayo because of the organization, then you get to see the quality of the docs...sometimes it doesn't work. My wife had a hip replaced recently, Mayo was first on the list, but they weren't the best out there, but Mayo referred her to the best in town...it all worked wonderfully. Also, a rheumy should be your main doc in the team, and should coordinate all the others (at Mayo, that team is put together automatically by them, not me running all over the place or relying on others' suggestions). OK, I'm done...Mayo is not the best, but it's the best chance if that's what one has nearby. Best to all who need help!

    PS: as many know on here, I do specialize in being contrary though!! LMAO!!! Someone has to keep us thinking outside the box!!!
    Last edited by Dirty Don; 02-21-2015 at 04:41 AM.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  4. #14
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    If you believe the Vasculitis foundation list of recognized experts for treating GPA is credible, then Mayo has to rank pretty high as a good place to go since they have as many, if not more, names on the list for experts as any other place.

    I know I was close to dying at a local hospital that had no clue as to why until they sent my lab work to Mayo for a consultation who advised that it was 99% likely I had Wegs. Mayo wouldn't take me for hospital treatment though since I had just gone on Medicare but they did consult with my treating staff at another larger hospital, where they had experience treating Wegs, on the treatment that I needed to save my life. I also now do see at expert at Mayo now as an outpatient and for consultation on my on going treatment for Wegs although I get my treatment at other places closer to home.

    I agree that not every doctor at Mayo is going to impress everyone they see as outstanding but generally the odds are very good that you will see some one who is at least very competent in their field. After all thousands of people come there every week from all over the world plus hundreds of doctors from other clinics consult with them daily about their patients so they must be rather good at what they do.

    There are also many other very good doctors at many other places who may will give you just as good care. The important thing is to find someone you trust to give you top quality care. If you are having trouble finding such doctors then going to one of the recognized centers of excellence or experts is a very good move. Finding a good doctor with expertise in Wegs used to be the first and most important advice given here to every new member since bad care can be fatal.
    Last edited by drz; 02-22-2015 at 05:42 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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