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Returning to Mayo?????

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I spoke with a patient advocate at Mayo Clinic this week and told her about my experience there.

She was very nice and offered to sort things out and get my a personal appt with dr Low if I was willing to rteturn to get the results of my testing.

After long thought, My husband and I both agreed it would be in our best interest to finish what we started.

I have an appt with Low for June 27...all the rest of the tstubg will be that same day...so it will be a day or 2 stay at the most.

I guess I am just wondering if I am doing the right thing? I wanted to throw it out to those who are patients of Low.

I feel if I do not see him than this horrific trip we just took will be in total vein....

Thanks Guys :rolleyes:

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Hi Jen

I think you are doing the right thing to go back to see Dr Low for the consultation and testing. That's the reasons you were going there the first time.

Congradulation on standing up for yourself and getting through.

I will be thinking of you and hoping everything goes well.


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Hi Jen,

I don't want to "burst your bubble". I think it is important you have any testing that needs to be done completed. I had a similar experience to you last year though and also had to go through a patient advocate to see Dr. Low.

He was polite but he was very rushed, did not explain the tests very well and in the end said, "well, you have POTS there are no other meds for you to try that you haven't already tried so go home and follow up with me in a year. (Basically, learn to live with it). And, there were some tests my cardiologist wanted run that NEVER got done.

So, my point is...have the testing done but try not to get your hopes up or expect much.

I do wish you the best and please keep us posted and let us know how your experience is!!

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Thank you ernie and Pooh Bear!

Poobear - Yes I am not going expecting Dr Low to save me or anything. I have decided already that Dr Grubb is my Dr and that noone can surpass his knowledge and care.

But I do think it would be incomplete without following up this testing. Even Grubb told me Low would say nothing more than for me to take Mestinon, which Grubb already wants me to start.....

I think it I will be going more for my Dr in Boston than anything else.

Ernie. I am thinking about you and praying for your family.. I send you good wishes.

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