Going To Mayo Clinic In Three Weeks -- Need Advise

[lynnie22]

I have my second appointment at Mayo in Rochester in three weeks, after three years. My first appointment I was luckily diagnosed with POTS although the initial protocol was exercise and a beta blocker. My symptoms got much worse over the last year which is the reason for my return. I saw a cardiologist the first time who I'm returning to. He has also referred me to one of their neurologists, mid week. So far they have only set me up for the standard tilt table test and the sweat test, as well as I'm sure blood tests and some cardiology tests. My schedule so far is very empty.

I want to know if possible why I have POTS and what type and some direction. Rochester is a long way and I'm in hardly any shape to get there, but there is truly no one to see here. I want to know if I should try to speak to the neuro there before I even meet him -- and what kind of tests I should be asking for, what I should want to know. Or just hope that he does the necessary testing.

The first time I would never have been diagnosed at all if the cardiologist didn't recognize my symptoms as POTS and order the tilt table test. But I never learned the details of my autonomic dysfunction.

I have been tested in NYC where I live 8 months ago and hope that Medicare will pay again for the tilt table and blood tests. No course of treatment has been pursued here, so I am feeling pretty desperate to get some answers.

Any suggestions on how to proceed? -- whether to contact the doctor before I go -- if I should be armed with specific questions and requests. I'm feeling pretty desperate to get some help.

I did write an email to the cardiologist to tell him of my concerns and asked him if I should stay one week (only scheduled for three mornings so far--maybe they are waiting until they talk to me, I assume) and other things. I haven't heard from him yet.

I welcome any suggestions. Thanks!!

[corina]

We don't have the extensive testing here in the Netherlands that Mayo offers so just wanted to wish you all the best on your Mayo visit. I truly hope that you will find the answers you need!

[kayjay]

Seriously - they are experts.

I cannot say enough good things about their pots clinic. You will not need to ask for tests. I would definitely go with a notebook - I have a list of questions each time and also take notes on everything the doctors say. One of the best things about mayo is that you will be able to access everything online when you get home. I can pull up all of my labs and notes at any time.

If you have had ct scans and such you may want to send a copy a head of time. I didn't want to have any more testing than needed.

I'm not sure where you have been previously. I was a Johns Hopkins patient and spent a week at NIH in addition to my local area hospitals. Mayo clinic is on an entirely different level. Mayo clinic was very respectful and humble.

Additionally they take a approach. You aren't just seeing one type of doctor. I left with a comprehensive plan. It included exercise instruction, dietary advice, lifestyle tips and medications.

I was repeatedly impressed. I'm not cured, but Im far more functional than I was.

Best wishes to you.

[lynnie22]

Hi KJay,

I hope so. I a not being seen at the POTS clinic. I'm too old for the clinic itself, ad no appts available. They squeezed me in to see a neurologist. The last time I went I was impressed for sure but alot wasn't addressed as far as endo problems at least. Because I'm not being seen by the clinic but have a consult only with the neuro later in the week, I'm alittle concerned that there won't be time to really get to the bottom of this. I'm sure they will try, just concerned. I've been feeling so badly that I don't know if I'll be able to make that walk to the place where they have the tests, let alone get through them. Lately getting out of bed and up before late morning seems to be very difficult. Everything is at 7AM.

[kayjay]

It is certainly a push- but it's a good place to have troubles. Is someone able to go with you? Do you know which neurologist you are scheduled with?

[lynnie22]

Hi KJay,

I am going alone. I hope I get there. I've been pretty sick for the past six weeks with some infection that isn't getting better. Anyway, I know I'm sounding like a big kvetch, I'm just so frustrated.

The neurologist is Dr. Low. I have never met any of them.

I'm glad you've had good experiences. I had a good one the one time, just not enough info on my condition or enough of a plan going forward. I probably should have gone back long before this.

[looneymom]

Hi Lynnie,

If you have been to doctors in the last year with complaints of different symptoms or other testing or labs have been run, you might want to get a copy of these records and bring them along. My son was seen by MAYO in Rochester and they looked at all the test that had been ran and then reran some test to check to see if there was a problem. I hope you are able to find out more the second time around since your symptoms are worse and you have not improved on the normal meds. for POTS. The cardiologist that takes care of my son believes that most adults have something underlying that is causing the POTS. Please keep us posted on your visit. I am quite curious about how they will respond to you. Our cardiologist would like to send our son to be reevaluated since his condition is worse but we are not sure if a return visit to MAYO is the place to go because his current symptoms.

Rachel

[lynnie22]

Thanks Rachel. Yes, I will bring my test results since. I am writing the cardiologist I am seeing (have sent him an email which he hasn't responded to about other concerns) to address other issues. I am also concerned about why.