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Off to Mayo Clinic I go


StandUpSitDown
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I start my experience at Mayo Clinic Rochestor on Monday. I am looking for diagnosis - nothing more. I get a higher heart rate almost immediately upon standing that levels out at about 30BPS above normal - and then any activity is 'bonus' above that - but at normal rates of increase. So if I am on an exerbike that will take it up a bit more, as I would expect. It's that initial jump that drives me nuts and makes me feel poorly. I purchased a BP cuff - and that never shows me going down, and I took it to 20 minutes a couple of times. But I gotta tell ya, it's hard to stand up that long unless I compensate by squeezing my arms against myself etc..

My chest pain has lessened greatly - I have applied both hot and cold to it, and hot seems to help more, FWIW. (I know this is different for others.)

The big thing for me, honestly, is to know the what - wherever it leads. I told them I don't plan to leave until the what is found, so they know I am taking this seriously.

And I don't know yet if it's typical POTS. I certianly have no blood-pressure lowering. Just that spike in heart-rate.

Fortunately my PCP is a dream to work with - so doesn't freak out at Mayo helping to diagnose. :D

But I have to say, folks, this whole thing *****. Just to let off steam: In May of this year I hiked 5 miles. Now, I can walk 20 lengths of the house back and forth and that's a work-up. And I have my wife drive me places. And I can't be in an all-day meeting I am supposed to be in Friday because there's no way I can sit up in that chair 8 hours straight (with breaks of course).

Jeez.

But you've all went through that too, I know..... so I am not looking for pity. But right now you see a person really annoyed at this situation. What a life-impact it is!

So, yeah, I want a great treatment out of Mayo too. It's just that I am tempering my hope to just diagnosis to not get a bitter disappointment.

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FYI If you see Dr. Feeley, don't let him leave the room without answering all of your questions. If he tells you to get dressed, just know that HE will NOT come back in. His nurse will. The first time I was at Mayo I did not know my specific diagnosis until my GP got the medical report from Mayo weeks later. Very Frustrating!! I wish I would have known this prior to my visit. I have seen him several times and each time it was the same scenario, although I did learn to ask my questions before he got away.

Best of luck to you. Can't wait to hear how it goes for you. Keep your head up, we have all been in your shoes. I was an avid exerciser and weight lifter when my POTS really flared up. It is so hard to deal with having that taken away. It has been 5 years for me and I am still dealing with the frustration (as most on this site are) of limited activity.

Hope this helps!

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To add a little to what RaeJae said, it was my experience that it's difficult to get paperwork, reports etc from Mayo once you leave.

I stayed an extra day and went by to pick up a complete copy of my medical records. You have to go to the records dept which is in another bldg but if you can, ask about it. At least get what records you can prior to leaving!!

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Guest Finrussak

Hi "Stand up"

GREAT news and I hope you get all of the answers and god willing even treatment options. May I ask how you got them to even look at you? Before finding and waiting 18 long months for Dr Grubb I had 2 neurologists ( one who knew Dr Lowe personally) and 3 cardiologists, my tickborne consultant and my reg dr all call, email and write...all I got back was a FORM LETTER stating my records dont fit any current research protocols and that they get more requests than they can handle...good luck elsewhere. My dear of a cardiologist phoned twice ( once nearly in tears while in my hospital room) willing to FLY me on a med jet anywhere...[at that point I was 84 lbs ( reg is 105) and having several episodes per day and they feared my heart wouldnt hold out]...begging for names of other doctors and they told him they have a policy of not recommending non-Mayo people and sorry but they cant ( as in wont) help.

Consider yourself BLESSED to have gotten past the doors...and I truly wish you the best. Hang in, it will get better!!!!

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To add a little to what RaeJae said, it was my experience that it's difficult to get paperwork, reports etc from Mayo once you leave.

I stayed an extra day and went by to pick up a complete copy of my medical records. You have to go to the records dept which is in another bldg but if you can, ask about it. At least get what records you can prior to leaving!!

Thanks for the well-wishes everyone. The advice regarding records is good. Fortunately, it has been a habit of mine for years to do that, because once you go from being in front of someone to being on the phone, it's much harder to get things done.

The advice re: get questions answered is good, and generally it applies to all people I meet with in a professional setting. Generally, don't let them leave without asking what is next, and if you will see them, and if not, get everything answered.

The point I will drive home is that I do want to stay until diagnostics narrow things down to as much specifics as possible. I have a rare window of time where I can spend at this without worry of things falling behind at work, so if I don't stay and figure this out now, I don't know when I would.

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Good Luck ~ I hope your appointment goes better than mine did ~ I also had Dr. Fealey..and actually I am supposed to be going back to see him for a folow-up this next month...but am I going - NOPE! I honestly believe that I am getting MUCH better treatment from my Internal medicine doctor. We talked about my appointment with Dr. Fealey and he too agrees that it isn't worth going back.

Definitely make sure you ask ALL the questions you need answered. I asked them and got the look anf the repsonses that I was stupid for asking. So don't let them make you feel like that. If you found info somewhere you want more answers about, ask...don't let them make you feel like you don't know what you are talking about.

They did diagnose me with POTS, so I am not sure how they will be with you as you are trying to get the diagnosis. I was shipped to them by ambulance from my local hospital...they had to deal with me :)

Good luck...let us know who you are seeing!

~lisa

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