Mayo Clinic

[tmkd]

I'm a little frustrated with the way my Rheumatologist has been handling my case and I only hear good things about the Mayo clinic. I live in Canada with our "free" healthcare system I was wondering if there were any other wege's here who live in Canada and have gone to the Mayo clinic. I would like to hear some stories, and problems that may have arisen so I see if the Mayo Clinic is a viable option for me.

Any thoughts would be appreciated :)

[Dirty Don]

I've been with Mayo in Arizona for almost 3 years...imo, they are the best. Most especially their system and how they handle patients. They are thorough, aggressive, and think outside the box. Remember they are a 'research' facility so their main points of emphasis are the things they are studying, not necessarily for what anyone has already. I know nothing about how they'd handle you from Canada, but one of their main points of emphasis is their international patients facilities. Best to you.

[tmkd]

I'm a little concerned about cost, honestly, but also tired of 'not really sure' answers, and 'let's wait and see' from the medical professionals I see here. I know my health is priority #1 and I'm coming up on my 1st anniversary of being diagnosed, so flares are on my mind. Having lost my kidneys already I don't think I could take another organ failure, lol.

[pberggren1]

Hi Thomas. I too thought of going to Mayo in the early years with Wegs. Know I know that thinking is foolish. There are actually many good docs that know Wegs all over Canada. I would try to find a doc at your local medical university. What about the University of Manitoba? Don't they have a medical program? If so, you would probably have better luck at finding a good doc there that knows Wegs. I have an awesome Nephrologist that knows Wegs quite well in Regina. Are you in Winnipeg?

home (http://www.canvasc.ca/references/winnipegref.htm)

The link above is for a couple Rheumys in Winnipeg listed with the Can Vasc site. Personally I have had much better luck with Nephrologists, but of course the personality of the doctor plays the biggest role.

Again, there are too many good docs to pass up right here in Canada to have to travel to Mayo and pay a fortune. My cousin went to Mayo last year because he is too rich and stubborn. I could have diagnosed him over the phone. He doctored in Regina for a couple months then got fed up because he was not getting answers. He was diagnosed with GCA, another vasculitide. The Mayo bill was 18 grand. He still thinks the trip to Mayo was worth it. He just didn't know how to network and research right there in Regina.

[drz]

I'm a little concerned about cost, honestly, but also tired of 'not really sure' answers, and 'let's wait and see' from the medical professionals I see here. I know my health is priority #1 and I'm coming up on my 1st anniversary of being diagnosed, so flares are on my mind. Having lost my kidneys already I don't think I could take another organ failure, lol.

Have you requested a free consultation through the vasculitis foundation? Their consulting experts will review your records and discuss your case with your doctor regarding treating and diagnostic issues. You just have to have a good local doctor willing to do it. Check out their web site. My Weg expert at Mayo consulted on my treatment before I went to see him later to join their study on GPA. Isn't there a Canadian facility involved in the longitudinal GPA study that you can visit? You can opt for annual visits or quarterly visits.

http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/flyers/MicroPoly-WegenersNov11.pdf

[tmkd]

Thanks, I'll look into that!