I really am glad you had such a positive experience and you found the help you needed.

I agree, their model is the best when it works, but for it to work every team member needs to be on point and really hearing/listening with the patient. It’s just that in my case, it didn’t work as intended. Somehow…they just…misdiagnosed me. Specifically, the evaluation turned on the opinion of one physician who had a very limited perspective about an atypical presentation of a condition he was very familiar with. He didn’t listen to me.

My most recent experience was better, but somehow, I ended up leaving Jacksonville after my initial evaluation without a plan of care because the physician I saw gave me instructions, only for me to find out from his team the next day that what he said was possible wasn’t possible. All my appointments were canceled with little explanation.

I contacted his nurse, the designated contact for patients in this clinic, and she told me she would call me “the next day” to straighten things out. That was April 27th. After leaving one message per week for them, I didn’t hear from her until the first week of June. In the interim, I was given various different pieces of conflicting information. She apologized, agreed it was conflicting, and is trying to make it right. I spoke with her on a Friday, and she said she’d call me on Monday.

But now it’s July, and I’m literally still waiting for that follow up phone call. I’ve sent 2 portal messages and left 2 phone messages.

I understand things take time, and I don’t regret going, and I still hope things work out, but this isn’t the way the program was presented to me when I took the risk and flew across the country to trust them with my care.

That’s what my reference point is when I say my experience wasn’t the experience of the commercials. I actually still feel and felt really sad. I’m still struggling to access the appropriate treatment, the main reason I went to Mayo.

I know it’s not my fault, but it makes me wonder what I did wrong to deserve the experiences that I had vs. the experience that you and others have had.

I am happy for you. I just wish I could also have that experience.