Living with Lupus
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Second Opinion??

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Post by AbsolutelyFab Thu Apr 30, 2009 8:24 pm

I trust my rheumy's DX. She is very thorough and is also a professor of medicine at the local University in Grand Forks, ND.

Both my husband and my parents want me to get a second opinion at Mayo in Rochester. I only live a few hours away from Rochester but would need to spend an entire week there for the testing. Not sure if I can afford it or if it would be worth it....my dad is currently being treated there for non-life threatening prostate cancer and he says they are amazing!!

Has anyone you know gone to Mayo? Any thoughts?

Hugs,
Beth
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Post by Poppy Thu Apr 30, 2009 10:54 pm

Hi Beth:

Personally, I don't have any experience with the Mayo Clinic but have not heard anything negative about it. I have only heard good things about them. So, if you seem to have any doubts about your diagnoses or treatment, I would suggest going there and then you can feel at ease with what they may have to say.

It is always better to feel secure about your health issues. Good Luck in making your decision.
Poppy
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Post by socalmonica Fri May 01, 2009 1:10 am

I've only heard good things about the Mayo Clinic but have no experience with it. I think I would contact them and ask them how they do the testing too because lupus is so hard to diagnose. Can they diagnose in one week? A question to ask them. Although they may steer you in the same direction as your rheumy which at least gives you direction to go on, or if they don't, gives you another path to go by. I certainly don't think it would hurt if you could find it in your budget.

Monica

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Post by Rileysmom Tue May 05, 2009 7:29 am

Hi Beth,

Getting a second opinion if you have not had one yet is not a bad idea. I went to Mayo Clinic in Scotsdale, AZ in 2001 because my husband hounded me so badly, I had been to several other doctors and all had agreed that I did have lupus. Up to that point my lupus was really, really bad and the docs I was seeing only had me on plaquenil and steriods. My husband was not happy about my care and really hated seeing me suffer so much, so we flew out to AZ and spent a week. The rheumy I saw said I did not have lupus, but rather fibro and hypothyrodism! He took me off the plaquenil and prednisone and started me on synthroid. In the beginning I really did feel a whole lot better, but over time all of my issues came bounding back. So, obviously he was wrong about the lupus! Dang it! That said he was right about the fibro, he told me just to excerise to treat that, sure, easy for him to say, he wasn't in mortal pain, right? Anyway, I'm not sure when but my primary doc started me on effexor xr to help with the fibro and that really helped that. So all in all I was happy that I went to Mayo, all was not lost.

I'm sure you will be happy you went as well. Is Mayo in your insurance network? I was very fortunate, I can't remember now, but I know it didn't cost me a whole lot for the cost of the stuff they did there, but of course it did cost for the flight, hotel, car and food. Perhaps you can start saving up a little at a time and fit it in your budget, it's worth it if you can. It's always good to get a second opinion. One thing my rheumy I see now told me though, the doctors at Mayo go to the same medical schools he did, he actual has a classmate that works at Mayo! That's food for thought!

Melissa

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