Any suggestions for upcoming appt. at Mayo?

[ParrotPal]

Hello Friends,  I am going to Mayo in a few days for the first time.  I am very new to this subject and tests, symptoms, long and short term issues, treatments, lifestyle adjustments, related co-morbidities, etc.  So I am wondering if you have any suggestions of what to make sure I ask, when tests to expect or ask for, what underlying medical issues might exist and need to be checked, prognosis as far as resuming work (haven't been able to return to work for past 5 weeks since the "big" flare), etc.  I hate to get there, far from home, and forget to cover important things.  


Thanks.  

[mtgardner]

That is good to know.  I am possibly also going to Mayo (Minn).  I am at least talking to them about it right now.  They have so many tests available but you make an important point I will keep in mind.  I plan to review a lot of other posts and see if I can eek out more information on the types of tests others have had done.

Thanks, Marie

[NYCpots]

Hi there,

I went to Mayo this past Feb. and was dx'd with POTS. Have you already been diagnosed or are you going to go through the full battery of diagnostics (tilt table, sweat test, etc.)? Do you know which Dr. you are seeing?

You are in a much better position than I was as I had no idea about POTS when I went to the Mayo Clinic (I went for some endocrine issues) but since then I have tried to get quickly up to speed! Two  things they didn't do when I was there which I really wish had been done were: 1) test for hypovolemia and 2) test epinephrine levels lying down vs. standing during tilt table test. Although these seem somewhat more standard at Cleveland Clinic and Vanderbilt, it seems as though you have to specifically ask for these at Mayo and they can help determine which treatments may be more effective than other (though there is still always trial by error as it's not totally correlated).

In addition, I would ask whomever you see to talk through the different treatment / medication options your local doctor should try and in what order, for how long etc. Once you leave Mayo they are very difficult to reach as they are not very interested in ongoing treatment. As a result, if what they first suggest doesn't work well for you, you and your doctor might feel at loose ends.

I am not sure if this is helpful but if I can tell you anything more about my experience that might be useful, please let me know and i"ll do my best to get back to you quickly.

All the best and good luck!

Brita

[ParrotPal]

Thanks bluewind.  I guess I just feel a little paranoid about not getting enough out of the appointment - that would be based on historic dealings with some, not all, physicians, where they rush you in and out and throw out a diagnosis and prescription with you.  I am surely hoping that the Mayo will not be like the typical busy medical office mill when I go to a local doctor.

[bluewind95]

Hmm, I can't think of anything in specific at the moment, but I think it's a good idea if you go prepared. Do a bit of research and then write down all the questions, comments, doubts, things youwant to know more about that you get while doing research. Then take tha to yur appointment. Building upon knowledge is always easier than building the first parts of knowledge, so I thnk that would help you, even fi it's just gnerealized advice.