I was originally diagnosed in July locally (I live in a suburb of Minneapolis, MN). But because my condition was so "rare" my neurologist here didn't really know what to do to treat it. Within days I was on the Mayo Clinic wesbite and requested an appointment to be seen in Rochester, since it's only 80 minutes from home. I received a call 3 days later from a patient intake representative who then sent me a long questionnaire that I had to fill out online. I had to be as detailed as possible and submit it within 48 hours. They said I would receive a letter or email within 7 days to let me know if an appointment would be granted. 7 days later, I received an email saying that I was on a waiting list for an appointment. A few days after that, August 8th to be exact, I recevied a phone call saying "We have an appointment available on November 6 at 7:30am" and that was the soonest they could get me in. It has been an agonizing 12 weeks with another week to go. But so grateful for the appointment and all of the tests they have set up for me while I am there for a few days.

I'm sorry to hear of your experience - that sounds very frustrating. I will say that Mayo Clinic is very thorough and detailed with their information and I have felt very well informed through this whole process. I suggest you submit a request for an appointment because you just never know! They do say you need to plan to be in Rochester for 5-7 days as they may schedule more appointments depending on the findings from various tests. I hope you can find some answers and relief!