What to expect from first Mayo visit?

[Eillyre]

I was initially diagnosed with POTS about four months ago by a doctor at UPenn. Since then, I've been trying a variety of medications while waiting to get an appointment at NIH. Nothing that I've tried has really made a significant difference in my symptoms and my condition is slowly getting worse. I'm in the midst of scheduling an appointment at Mayo, but wondered what exactly to hope for/expect from this visit. Any ideas as to what you have experienced with similar trips? What usually results from them? I would like a more definite diagnosis as well ideas as to what to to do get back to a more normal life. Are there questions that I should ask that I might not think of? I'd love any advice you have! Thanks for listening!

[Ernie]

Hi,

You will have a battery of tests,a diagnosis and maybe they will suggest some treatment. Usually you are an outpatient and you have to stay in a hotel nearby.

Good luck

Ernie

[Gena]

I went to Mayo in Jacksonville in September. I took a list of all my symptoms and questions to ask the doctors. I also took a copy of all my previous medical tests I had done this year and put them in a binder with tabs. I categorized the tests, such as Heart, MRIs, Blood work, etc. and put each category in date order so everything was very easy to find. I also had researched and wrote down all of the tests that I wanted done....was hoping the test results might help in coming up with treatment plan for my POTS symptoms. The neurologist listened to everything very intently and took a lot of notes...he spent almost an hour with me. He then ordered tests that I wanted in addition to a lot of others. I had urine tests, blood tests, autonomic tests such as TTT, blowing in a tube, a sweat response test (that's not the actual name of the test, but I can't recall the scientific name).

You normally don't get to have all the tests done the same day, as it all has to be scheduled with various depts., so that's why they tell you to plan on staying a minimum of a few days. If you go to the dept. you're supposed to have a test with a few hours earlier or even a day or two earlier, sometimes they can work you in if you want to hang out "on standby" since they often have people who cancel or don't show up. Also, I couldn't stay and wait for my follow up appt. to see the doc to review my test results, so he agreed to that I could call him the following week and he'd review the results over the phone. He did and that worked out fine.

Overall I thought they had a great system and I never had to wait too long at any dept. for tests. Bring a book to read or knitting or whatever, just in case. Almost all of my test results came out normal, which was great, but also frustrating because the neuro summarized in his report that maybe I didn't have POTs, and perhaps I just had hypovolemia. However, the cardiologist I saw said that based on my symptoms he felt I definitely have POTS. He said you can't go by test results alone. So anyway, I hope this helps. Overall, I was glad that I went.

[Eillyre]

Thanks for the input Ernie and Gena. Your information will make it easier to prepare for the trip. I especially like your binder idea, Gena, and the tip on standby! Thanks again!