Has anyone been to Mayo Clinic?

[Centime Tara]

I was surprised how easy it was. I called them, then a representative called me back for a pretty detailed interview. They scheduled me for about 3 weeks later. At first it’s confusing how it works, but they really have the system down. We were amazed at how efficient it all was once we got started. They schedule you with back to back appointments and tests, so you’re very busy while there. I have to go back because they want tests they couldn’t fit into the time I’d planned to be there. They do first available appointments, and sometimes they’re pretty spread out, but if you’re willing to wait they’ll group them for you. So it may be a month or so before I go back, but I’ll only have to go once. They keep adding tests and appointments depending on what they find out when you’re there, the results are immediate (same day) and all info is available on their portal. The whole experience was A+, and I really wasn’t hoping for much, having heard all the bad press. I’ve been sick for a year, and not a single doctor I saw (8!) had a clue. The doctor I got there nailed it immediately. The first appointment was 2 hours. I’ve never been treated with such care. People say some doctors there are better than others, but I saw three and they were all exceptional (internist, cardiologist, pulmonologist). Still to come: neurologist, psychiatrist, immunologist. I feel very confident in their expertise.

 

[Centime Tara]

PS I have Medicare and supplementary insurance. I don’t know how much that affected their taking me so quickly.

 

[maggie3]

@Centime Tara, thats great to hear! I just started the process of getting an apt (Mayo should contact me in a couple days) but it is great to hear your positive experience.

 

[Centime Tara]

I don't know if they can do it, but try to get Dr. Razouki. He was the smartest, most present doctor I've ever seen.

 

[sometexan84]

I have a friend with autoantibodies known to cause autoimmune encephalitis (AChR Ganglionic, CASPR2) who sought out a doctor at Mayo and was told that he is depressed and needs to stop chasing a diagnosis.

That is a rare condition called Autoimmune Autonomic Ganglionopathy, with the ganglionic AChR antibodies. It's somewhat treatable. It causes great autonomic dysfunction.

All my symptoms match up with it, I get my antibody results back in 2 1/2 weeks.

 

[Centime Tara]

Update: I've already written about this in other threads, but the short version is: Mayo was a huge disappointment. I spent a total of three weeks there, and they tested for all kinds of things. But they're still teaching graduated exercise therapy and cognitive behavioral therapy as their primary recommendations for ME/CSF. They knew absolutely nothing about supplements or any of the current protocols suggested by various ME/CFS specialists. They also screwed up a very expensive test and I had to fight a big battle to get them to not bill me for it.