@peabody88 this is an interesting post and at one time my doctors also had me convinced that it was all in my head (over three years) despite the continued progression of my symptoms. Could you share with us your symptoms and exclusions thus far?
The Mayo Clinic is touted as one of the best medical facilities in the world, however, I can tell you that they have their inefficiencies as well. After a couple years of pondering whether to go I finally submitted my application in May 2018 and I was accepted in less than a week. The following month we flew down from Canada and started my appointments with doctors. After the first appointment the lead doctor overseeing my file advised that she had to leave the country for a family emergency. I don’t understand why she did the initial consult if she already knew she was leaving. I was advised that another specialist would be taking over my file. Unfortunately, that person called in sick the next day and in the end no one was overseeing my file. There were several other mistakes as well and some of the worst came from the billing department. By the end of day three my husband lodged a complaint with the facility and we are still dealing with invoices that were double and triple billed. I’ve sought legal advice from an American attorney about the invoicing issues and his advice was to stop paying the invoices.
In the end, we wasted over $20k and we walked away no further ahead. My application was for hyperammonemia with unknown aetiology so they actually had something to go off of but rather than refer me to genetics, metabolic, etc. they literally did all the same tests that my doctors had previously run in Canada. I was never questioning the tests and procedures that were conducted back home but I realized that we put all our trust into these doctors and I truly thought they would use their best efforts to help me. Unfortunately, I feel like we were duped and we are not the kind of people that are easily pushed over, I’m a lawyer and my husband is an eye doctor. So in the end, would I recommend the Mayo to provide you with a diagnosis? NO, I would not, unless they provide you with a clear path of exactly what tests/procedures they plan to do and why. Unfortunately, if you ask for detailed information prior to seeing a doctor the response will be “you need to be seen by a doctor first”. Don’t waste your money and instead find yourself a new primary doctor that believes you and wants to help you find a solution. I did this upon returning home from Mayo and it’s made a world of difference and I finally have a doctor and a geneticist advocating on my behalf.
I hope this is helpful and if you want to reach out to me directly, feel free to do so.