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cordellia

Making Our Way To Rochester

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spring greetings to all:

have been combing the archives and searching for info relating to the mayo...

leaving for rochester on monday. scheduled to meet with a neuro named paola sandroni

on the 22nd. has anyone consulted with her? feedback?

tips on the mayo? this is very last minute. we were notified today--little time to prepare. am so grateful for this opportunity.

hoping that i can learn and share.

my main issues continue to be: hypotension, bradycardia, exercise and heat intolerance,

inability to stand for any length of time, flushing, random tachy, occasional hypertension. would be thrilled to have a REAL

diagnosis... or at least a better understanding of what is happening to me. trying to temper my expectations concerning the mayo... but optimism keeps rearing its cheery head...

with healthful wishes,

cordelia

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Here's to hoping for a wonderful outcome and a direction for your future. Let us know how it goes and what you learn.

Issie

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Wow, my prayers worked :D !!! That was quick. I have no advice, but am sending good thoughts and continued prayers for answers and a regimen that works. Keep us posted as you can.

Safe travels-

Julie

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good morning,

thanks to each of you.

not certain what to expect...but very grateful to be going...

trying to organize records and to put together a comprehensive history/overview.

want this trip to have a real yield. julie, thank you for your earlier advice about

defining objectives for the visit.

i sincerely appreciate your input, encouragement and prayers.

healthful wishes to all...

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Hi Cordelia,

I have heard of the doctor you're going to see, but I'm only familiar with a Dr. Goodman, who is an autonomic specialist at the Scottsdale Mayo (he moved back to AZ from MN a year ago), and Dr. Low, in Rochester.

Good luck in Rochester (pack warmly, it's still cold there), and try to get in at one of the hotels that are connected to the main clinic, where most of your appointments will probably be), and let us know what you find out. Best wishes to you!

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hello jana-- many thanks...excited by the prospect, but tempered by realism...wishing YOU well... with my best, ~c

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I was supposed to see this neuro but saw Dr. Fealy instead. She came to Philadelphia and my doctor was very impressed with her. Of course I still have POTs but mayo was very helpful. You are in a great place and I am glad you get to go. Feel free to message me if you have any specific questions.

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Seeing Dr. Low at Rochester was very eye opening. Lots of information. Take a friend/relative to help take notes or record the session. Found the smart phone works great for this.

Downside is their follow up imo... pretty much nothing, at least with Dr. Low. When you leave, ask what you can do as any further questions come up and see what they say.

You can easily get copies of all your tests and doc notes. They can print them out for you at their medical records office as soon as they're in the computer.

Stay in one of the connected hotels. Yes, yes, yes. Don't worry about how long you'll be there re the reservation. They're used to that.

Totally "Minnesota nice". Everyone in the town is very helpful.

Good luck!

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we are en route--armed with more good information. dianne, thank you.

my husband's note taking skills will be finely honed by the end of this foray.

yes, the "minnesota nice" was in evidence as soon as the plane touched down.

best, ~c

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Hope it's going well up there! Keep us posted if you're feeling up to it. :)

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Hi Cordelia-

I'm sending lots of love & prayers for a fruitful visit. Keep us posted as you are able.

Gentle Hugs-

Julie

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Sandroni diagnosed me, after 7+ years of misdiagnoses and being told I was fine (or depressed!). She is great. A bit humorless, but an excellent doc. The Mayo process is inspiring - a scheduling marvel. Their ability to send you off for a test after they see the results of the previous test... So great. Would've taken months and so much time off otherwise. I agree on no followup. Ask very specifically what your regular doc/card/whoever needs to know or do. Good luck!

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