My mayo rochester experience

Greetings – I would be happy to chat with you outside of the board if you want to contact me. I spent a week and a half at Mayo in Rochester the end of May and early June. Quite the experience.

I was diagnosed with CIDP in 2001 and have had many ups and many many downs. IVIG had lost effectiveness and I had also had severe reactions.

That in conjunction with several test results from spinal taps over the years always left some questions about my condition.

My Mayo visit was a whirl wind but I found that they took alot of time with me. ALL test were repeated and I mean all – from taps to catscans to mris to blood work to nerve conductions. Very thorough. I will say that if you do not have good insurance that you can ask ahead of time and control what they do. They prefer to have all test results before they do anything.

It helped that I had gathered all my previous history and made a summary in advance that gave them a chronology of events and that I put all my tests in order.

I had a list of detailed questions ahead of time.

Depending on how well they can schedule you – you can be in and out in a couple of days. Three is a good estimate but if the weekend falls in between then add more days.

Unfortuneately for me I had a bad catscan and ended up staying. They did offer to refer me back locally for additional testing but I chose to stay and get care there.

It was humbling being in the clinic that actually clincially discovered and named cidp.

I would be happy to share my info in more detail if you have questions!

I wish you well!!

Lisa