averagejoanna (@averagejoanna)

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.

Thanks for the responses, they do help us cope with the rejection. We're going to try to find a local MAYO trained doctor in Illinois and see if he can refer us to Mayo after he/she TOO is baffled by what is going on. The rejection letter said that they don't feel they can offer any treatment that wasn't already provided… which I know is bogus because there has to be a link between all these and because we're constantly being given "odd" readings on the bloodwork with no real responses. I hear NorthShore is the place to go so I guess we will just start all over again there, being poked and prodded once more until we can finally get the right ears to hear us. Thanks for all your support, it's great to feel included but also slightly frustrating to know how many people suffer without receiving the care they need.

I made this account for my wife, I'm hoping it will result in a helpful community where she can find support. Lately, she's been breaking down in tears because we have nowhere else to turn for answers and all she wants is a simple "what is wrong with me" diagnosis. After 6 surgeries, 9 different doctors, three hospital networks, and at least 5 specialists she's been given no guidance and a few "well it really could be anything" answers. I can't watch her suffer anymore, it's tearing us apart. She is at wits end so I told her, maybe it's time we seek out the best of the best and go to Mayo clinic. The last two months she has needed a break from any more tests, but I asked her to just give it this one more shot… apply to Mayo clinic. If anyone can help you find out what is wrong, they can. She reluctantly filled out the application, received a call, completed the questionnaire and was starting to get some energy back to address these issues head on…… then she gets an email… DENIED from Mayo clinic and she's deflated again.

I've been reading all your forums, about how to get an appointment, about "calling the customer care line" and other such tips. I can tell you, listening to how disappointed she is… isn't going to help. She needs to see someone and if you don't believe Mayo is the best place… where else can address all these issues at once: 14 kidney stones (surgery), endometriosis (surgeries), ovarian cysts (surgery), possible Rheumatoid Arthritis, chronic migraines, allergy to elevated heart rate, low libido, joint pains, etc. There are more, but those are just the ones from the last 3 years. How do they deny someone like this?

With this post, I'm hoping someone in the community can offer us an alternative because she is about to give up on ever finding out what's wrong, and I can't let her lose hope. We've been to all the "top rated hospitals" in Chicago to no avail. Where else can we turn for answers?

This forum post is my last desperate attempt to get her the help she needs… Please don't tell us to call customer care if it won't result in an appointment.