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Guest tearose
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Guest tearose

Hello gang,

Here I sit in my hotel room in Rochester MN. BRRRR winter has come! Day two done...I am wiped out! Since several of you inquired as to what it is like to visit the great OZ..Mayo Clinic...here is what I did so far,

day 1: neurology consult / ANS exam and TTT with QSART/ began voiding diary

day 2: Thermoregulatory Sweat Test/ chest xray/ECG/ Echocardiogram/

I have tests and consults scheduled for the remaining two + weeks, and here, once you see a "new" doctor there is always a good chance you get a new test added to your schedule. It is good to have extra time for those important add on tests and it is up to me to try and crush these into less time if possible.

Schedule now reads: Sleep study/ blood tests/ pulse ox overnight study/ gastric emptying 24 hour study/gyn exam-to address any prolapse situations/24 hour holter monitor/ cardiology consult, and shock of all shocks..a consult with a pacemaker nurse! Who slid that one in??

I am tired and know that after two maybe three weeks I will have a clear picture on the status on the functioning /dysfunctioning of my body. The hard part is not going back to my main doctor to discuss for example why the pacer consult without even speaking to me first ? But hey, I trust he wants me to hear all the options and make an intelligent, informed choice. (I think I must be pro active and ask to see him at midpoint rather than at the very end) I know my heart went haywire on the TTT yesterday. I was really wiped out! My heart did a flip I had never felt before and THEY looked scared. I think it will probably be the cardiologist who will review the results with me.

Summary: I am sooo tried. The TTT was very difficult for me this time. The thermoregulatory sweat was not bad. My chest actually still aches from the TTT. But when in real life would we stress our body that way? It is a testing extreme.

I maintain if I slept better everything else would find a better balance. I don't have more to say right now. Ask questions if you want to know more!

best regards everyone

always hopeful and very tired,

tearose

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Hello!

Thanks for telling us about your experiences. It sounds like you are going through a lot right now!! (all of those tests at once!)

Hang in here and keep us posted. :)

Lisa

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Hi Tearose,

Wow it sounds like they're going to put you through the ringer! :) But, hopefully you'll get an excellent idea of where you body is acting up and where it's not. I know it's grueling but how wonderful that you are able to have access to these top-notch tests and doctors and that you are able to take time off to do this for yourself. I went to Mayo in Jax and could only stay about 4 days so I did not get the full gamut of tests I should have. I had the basics, but wish I could have stayed longer. It is definitely tiring though.

Hang in there and thanks for reporting from the land of OZ. I hope you find some answers and that you have some ruby slippers to get you home safe and sound. :huh:

Hugs,

Gena

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Dear tired but ever-hopeful tearose,

It is good to hear from you. I was just thinking about you today and wondering how things were going for you.

Wow, the great Wizard of Oz is making you do all sorts of things. I hope that the tests give some good answers, and that the doctors can come up with some good plans for future treatment.

Thanks for letting us know how you are doing.

Rachel

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Wow! Sounds like they are putting you though everything! I will say Mayo was good to me. Hope the get to the bottom of things for you! Hope oz starts coming with a yellow brick road to the land of the right treatments......... :) ( sorry my mind is not working they best)

Keep us posted!

Amy

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tearose

WOW..I am glad to hear they are so THOROUGH up there. Hang in there..and I hope you get answers that can help your care to improve things.

Sounds like a lot of work but worth it if you get good answers.

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Hi

I know how u feel i have had the TTT last week in the hosp and it really was like u said they looked scared well after i could see again, hang in there, and keep us posted as i am thinking of goin there and wondered if it would give me any better answers.

All my prayers r with u

Donna

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Sounds like they are doing a good job trying to help you get a handle on what's going on with your body.

Good luck Tearose---------------you continue to hang in there and find some answers. I hope this will help you get better treatments to help your function levels improve.

BIG HUGS---------------------------------------ofpinkroses.jpg

Maxine :0) pinkblnkr.gif

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Hi Dorothy, er, Tearose

Good to hear from you from over there in OZ. I hope you get some answers and guidance at the end of all this. I think it is great that you can get all this testing done.

Try not to read into the facial expressions of the technicians--this is coming from someone who does that herself! Sometimes we can mis-interpret expressions and technicians don't always know as much as the doctor. Stay open to hear what the doctors say and interpret from your tests. Hope you are taking extra good care of yourself.

Katherine

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Hi Tea,

Thanks for checking in with us. I was wondering how your trip was going. I'm so glad that you have the opportunity to have such extensive testing and hope you find some answers. Please keep us posted when you have a moment. And stay warm...glad they have those underground tunnels for you!

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Hello gang,

Here I sit in my hotel room in Rochester MN. BRRRR winter has come! Day two done...I am wiped out! Since several of you inquired as to what it is like to visit the great OZ..Mayo Clinic...here is what I did so far,

day 1: neurology consult / ANS exam and TTT with QSART/ began voiding diary

day 2: Thermoregulatory Sweat Test/ chest xray/ECG/ Echocardiogram/

I have tests and consults scheduled for the remaining two + weeks, and here, once you see a "new" doctor there is always a good chance you get a new test added to your schedule. It is good to have extra time for those important add on tests and it is up to me to try and crush these into less time if possible.

Schedule now reads: Sleep study/ blood tests/ pulse ox overnight study/ gastric emptying 24 hour study/gyn exam-to address any prolapse situations/24 hour holter monitor/ cardiology consult, and shock of all shocks..a consult with a pacemaker nurse! Who slid that one in??

I am tired and know that after two maybe three weeks I will have a clear picture on the status on the functioning /dysfunctioning of my body. The hard part is not going back to my main doctor to discuss for example why the pacer consult without even speaking to me first ? But hey, I trust he wants me to hear all the options and make an intelligent, informed choice. (I think I must be pro active and ask to see him at midpoint rather than at the very end) I know my heart went haywire on the TTT yesterday. I was really wiped out! My heart did a flip I had never felt before and THEY looked scared. I think it will probably be the cardiologist who will review the results with me.

Summary: I am sooo tried. The TTT was very difficult for me this time. The thermoregulatory sweat was not bad. My chest actually still aches from the TTT. But when in real life would we stress our body that way? It is a testing extreme.

I maintain if I slept better everything else would find a better balance. I don't have more to say right now. Ask questions if you want to know more!

best regards everyone

always hopeful and very tired,

tearose

Hello gang,

Here I sit in my hotel room in Rochester MN. BRRRR winter has come! Day two done...I am wiped out! Since several of you inquired as to what it is like to visit the great OZ..Mayo Clinic...here is what I did so far,

day 1: neurology consult / ANS exam and TTT with QSART/ began voiding diary

day 2: Thermoregulatory Sweat Test/ chest xray/ECG/ Echocardiogram/

I have tests and consults scheduled for the remaining two + weeks, and here, once you see a "new" doctor there is always a good chance you get a new test added to your schedule. It is good to have extra time for those important add on tests and it is up to me to try and crush these into less time if possible.

Schedule now reads: Sleep study/ blood tests/ pulse ox overnight study/ gastric emptying 24 hour study/gyn exam-to address any prolapse situations/24 hour holter monitor/ cardiology consult, and shock of all shocks..a consult with a pacemaker nurse! Who slid that one in??

I am tired and know that after two maybe three weeks I will have a clear picture on the status on the functioning /dysfunctioning of my body. The hard part is not going back to my main doctor to discuss for example why the pacer consult without even speaking to me first ? But hey, I trust he wants me to hear all the options and make an intelligent, informed choice. (I think I must be pro active and ask to see him at midpoint rather than at the very end) I know my heart went haywire on the TTT yesterday. I was really wiped out! My heart did a flip I had never felt before and THEY looked scared. I think it will probably be the cardiologist who will review the results with me.

Summary: I am sooo tried. The TTT was very difficult for me this time. The thermoregulatory sweat was not bad. My chest actually still aches from the TTT. But when in real life would we stress our body that way? It is a testing extreme.

I maintain if I slept better everything else would find a better balance. I don't have more to say right now. Ask questions if you want to know more!

best regards everyone

always hopeful and very tired,

tearose

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Guest tearose

I am so appreciative of your support and hugs and..roses!!

It is so humbling to be here at Mayo. I feel dwarfed and sometimes lost and always hopeful...

I am trying to find some answers...the kind that make you feel like you are "pushing the envelope" without going too far.

It is too soon for most answers but I do have some...

My TTT and the sweat tests showed improvement in my condition, the doctor believes my efforts at exercise and hydration are directly related...I still have POTS but my high on the ttt went from 155 four years ago to 135 now. My legs appear to sweat more as well... So you guys have just gotta have faith!!!

I can't blame the pots for the pelvic prolapse...I have a mechanical problem, not neurological...this is better!!

I did the sleep study, I don't have apnea or any primary sleep disorder (great news) however, I wake up about 20 times and hour...what is this about? I don't know yet.

From the great insight and intuition of my primary Wizard here, I will be taking a four hour battery of tests to see what is happening with my grey matter. I think I could have waited to see if I would improve with better sleep but now I will see where I am now with my cognitive strengths and challenges. I am feeling embarrassed about this testing...are they going to discover my math skills have reverted? That I can't spell well anymore and that my comprehension is lacking??? Will they care that from where I was, where I am now is weaker?

Has anyone else taken these?

Well, with my heart on my sleeve, I will drag my funky brain and body to that test! Hey, maybe they can help me improve my challenge areas.

This whole experience is after all, to help me be my best! Difficult or not, I must step up to the challenge and hang in just a little more.

okay, time to go

thank you friends, I hope my sharing helps you believe in better for yourself, to believe there ARE good compassionate people in the medical field!

hugs, love and sweet dreams!

tearose

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