Hi Colleen, I'm sorry I simply can't believe that Mayo has nothing to offer her. That was what her rejection letter said, it's almost like saying: we're not even willing to try. All the "diagnosis" we've been given have been one at a time from an individual doctor vs from a team looking at the problem from a 360 degree view. That ALONE is something we haven't tried and, from what I understand, one of the greatest values that Mayo has to offer. I'm getting PMs now all the time from people telling me problems they have and referring me to holistic doctors, massage therapists, even one person sending me a Raki referral… not sure what that is but it sounds ridiculous.
Just last week she had mid-cycle bleeding, heavier than her normal periods for 4 days and is on yet another type of BC that doesn't appear to be helping, we've been back to the ER twice since my last post. She still has immense pain in her mid abdomen that we can't figure out the source. I know that with the right credentials and some focus, they can target the issues and help us. Not even being given the chance to come see you feels like we're not part of the elite who get the right care first. If you've seen any individual doctor recently, you know how busy they are and it's easy to see that they don't have time to consult with a community as you suggested. This, again, is why we feel the discussion among physicians is the key element to solving this case.
Yes I did know Northshore is part of mayo, that's why we picked it, hoping a connection to Mayo might help us with a doctor referral from a respected source. We're seeing one more doctor trained by Mayo next week, I'm assuming he will run the same tests and come to the same conclusions… this case is beyond one persons abilities. Hopefully THEN, we can get referred.
I'm sorry if my frustration is coming through, I simply can't understand how they refuse her even an initial appointment…. I'm willing to "incur additional costs for evaluation and travel" because I believe in the process. Even if they don't believe in us.