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:( I spent 2 weeks at Mayo, saw Dr. Low and many others. Had a good exam, and follow ups. I'm still not sure where I stand. I know through the cardiologist that I have mod-severe pots. My hashimotos that I goe when my son was born 23 years ago is still active and I have a thyroiditis. My heart other than CHF is ok. I was barney for a couple days and that was OK. He changed a couple of my meds, and I do feel a little better. I feel that I wasn't my own advocate because I had a list of questions and didn't pull them out to ask. He didn't rush me. I had another place to be and I had a brain fart. Now I'll have to wait till I get his plan. Sadly I don't know what moderate to severe potts means. I just know that I cannot deal with heat. I thought I would be gleeful after my visit. But still unsure.

Oh well enough rambling......Miriam

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Hello Miriam, I'm sure you will find out some answers from the reports when they are ready. It is overwhelming to be so thoroughly evaluated even when feeling ok, so considering the brain fog that we POTS sufferers normally have , it's not surprising that you forgot to ask all your questions. I hope you eventaully get some reassurance about your condition. I haven't been to Mayo but have been told it is first-rate. Take care, Martha

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Sorry you still have some unanswered questions. I actually felt a little rushed with Dr Low during the final appointment. I wrote down questions and taped everything but still felt like I left with some unanswered stuff. All in all I was pleased with Mayo and DR Low but just wish I could have had more time at the end to ask everything I needed.

I didn't find the follow up to be that great. If you have questions after reading your report you have to be pretty persistent if you want a return call.

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Hi Miriam,

Nice to  see you  back.  I am sorry that your visit did not go as you expected.  What kind of tests did you have this time?

Ernie

Sweat test, holter, cardio, 2different tilt table teats. Many labs. Fat analysis from my abdomen. ECG, thryoid ultrasound, arrrythmia check, electrical test of my heart. They we thorough. Miriam

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Guest tearose

Hey there mp-k, maybe you aren't smarter, but by meeting you and learning from you, THEY got smarter? :)

So, in the "grand scheme" of things it was worth it...right?

What sweat tests did you have? The QSART and the box?

I hope you get your records soon. I think you'll feel better once you can read thru and call out to Dr. Low and get a sense of the "new picture" of what is going on. Hang in there!

best regards, tearose

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Hi Miriam--

I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.

Want me to give Dr. Low a list for you? And your phone number!? :)

Ginger

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Hi Miriam--

I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.

Want me to give Dr. Low a list for you? And your phone number!?  :)

Ginger

YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of.

Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam

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Hi Miriam--

I leave Sunday for my first Mayo appt Monday with Dr. Fealey (in with Dr. Low). Since you just came back... what questions would you (or anyone) suggest at the follow-up or anytime. My husband will be along and take notes and be in charge of the "the list." I've got a few questions already, but input from all of you would be wonderful.

Want me to give Dr. Low a list for you? And your phone number!?  :)

Ginger

Dig it!!!!!!

YES I'll fetch my list and post them. Some are general for all of us, some my husband who understands dysautonomias wants to know, and I didn't think of.

Be prepared to see other Specialists. They really were all great, no one even volunteers were ever rude or short. Let me know how you like the NEURO tilt a whirl(Imean table). Back soon with my list. P.S. I also ssaw that doc first, very nice. Miriam

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