Recommendations for rheumatologist at Mayo Rochester

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

Jen, it's great that your family are willing to help out, and I'm happy that you have decided to "cave in" as you say.

It really is best to get to a clinic where they have doctors that specialise in WG.

I'm sorry that I can't help you out with any names.

Perhaps you could call Dr. Specks office and get a referral. You could also look on the vasculitis website.
Dale

I was at Mayo/Phx. A rheumy headed up the team which included a pulmy and ENT - they all communicated well about/with me so I was never wondering what someone was up to or thought...they may do the same for you in Rochester. Luck to you.

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Originally Posted by renidrag

Perhaps you could call Dr. Specks office and get a referral. You could also look on the vasculitis website.
Dale

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The website list Mayo specialists at Rochester in Pulmonary, Rheumatology and ophthalmology so I would recommend you see one of the two GPA specialists in rheumatology to start and then ask them for a referral to some one they recommend for an ENT evaluation. You can request an appointment on line or by phone which I would do.

I did see one ENT doctor there to try get my BAHA done at Mayo but he wasn't very helpful so I went to another facility where I got great service. I have seen some good ENT doctors there in the past but long before the Wegs hit me.

The treatment for your GPA is likely going to be the regular treatment for GPA tailored to your needs and the rheumatologist can get an assessment for you if anything else like surgery is necessary for your sinuses. Wegs in the sinuses seems harder to get under control than Wegs in lungs or kidneys partly because it is not regarded as seriously life threatening so the treatment tends to be less aggressive.

No names for you but I agree with others regarding seeing a "team" if possible. As long as you are going, you could try to coordinate the rheumatology visit with an ENT on the same day or within a day or two of each other. If you have ongoing inflammation and/or damage to your nose/sinuses, you could look to see if there is a rhinologist (subspecialty of ENT) available. I did this when I initially travelled to Seattle after diagnosis and it was so worthwhile.

OK. So an update...

I've contacted my insurance and they will pay if I have authorizations for it. HOWEVER, the chances of me getting an auth aren't very good since they support second opinions within our network. I'm having my primary doc start the paperwork. She thinks it's worth trying to get me up there for a consult.

I've contacted my current rheumatologist as well, and she agreed that my chances are probably not good for an auth. Then suggested seeing one of her colleagues for a second opinion. Personally, I'm not sure what good that will do... I was thinking that of anyone, Mayo might have a history with someone(s) with my symptoms. My assumption is that she's talked to her colleagues about my case already. So... what's the point of having a second opinion with one of them?

I'm just so frustrated with all this. I know I'm better off than a lot of people, but I'm tired of not having answers and always feeling just under the weather. Not terrible or flaring or anything, but just feeling run down, tired, having a hard time getting around, bad hearing days, bad sight days, etc. But then nothing shows up with my bloodwork.

I also have frustration on just not knowing. I feel like some weird hypochondriac. Every time something out of the ordinary happens I think "could this be part of what is happening?" and try not to freak out too badly. If I had a dx, I could at least say, yeah, I should call the doc, or nah, that's something else.

Sorry, didn't mean to go on. It's been a really frustrating couple of weeks. Had to see a new opthomologist because mine retired. I will NOT be darkening his doorstep again. I needed to know if the pain in my eye was inflammation or just my horrible dry eye. He was WAY too concerned with the fact that I wasn't losing weight and kept telling me that my blood sugars were high, and why are you on metformin if you're not diabetic? He couldn't understand that the prednisone was doing that. He did, however, immediately say when he saw I was on prednisone that it couldn't be inflammation in my eye - I was on prednisone; that would stop it from happening. This was all before he did the slit lamp exam. His final word was that I must be sleeping with my eyes open. Really?

OK. Enough with this...

Jen

Hmmm, Jen, if Mayo is out of network with your insurer, they would probably still pay something, just not the same as they would pay with an in network provider. You should be able to find this out through the insurer or with help from the office staff who has started the auth process for you, and then decide if you can still swing it.

I would agree that a second opinion from the same specialty within the same practice might be of limited value... but if it's all you can get then at least you are still having a different set of eyes looking at your records, labs, etc. Madison has a good medical community so it may not be a waste of time at all. Another thought would be to look for network providers in Milwaukee... a short drive or bus ride for you and a larger medical community.

I think everyone "gets" the discomfort and frustration of constant low grade symptoms and the uncertainty and fear that pops up every time there is a something new. You definitely have my sympathy there. Good luck!

Contact Mayo directly and ask what the cost would be for a consult. Ask your present rheum to do a free consult with on the experts listed on Vasculitis Web Site. That would give you a second look at your symptoms and treatment from a recognized expert..

I agree with Alaskatom. A second opinion in the same office might not help out much. Most insurance do pay out of network. If it's just the consult you have to pay for call and find out what the charges would be. It can't be that costly for a consult. If they order tests see if you can do them with a network facility. I'm sure there is a way to work around it. I know you are fatigued from all of this. Been there too. But I feel getting the right info from a really good dr is worth the out of pocket costs.


P.O.W.E.R. Positive ongoing waves encourage remission

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!

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Originally Posted by godgirl

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

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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!!!

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!!!

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.