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Benefits Of Full Autonomic Testing?


sideofsalt
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My POTS was dx'd by TTT back in 2012 and I believe I did the ACTHS test as well (normal results) but that was all that was done. I have not done the full battery of autonomic testing, but my new cardiologist is recommending I do that now if I want to learn more about my dysautonomia. If you have done the full battery of autonomic testing, how did that help you? Did it change the course of your treatment? At this point in time I am weighing the benefits of getting the testing done. I would have to be off of the medication for X days, and it may add to my medical bills, so I'm trying to determine if getting the testing done could lead to an improvement in my care. I am currently taking midodrine and propranolol with good results. I am also considering having a baby (my POTS developed after the birth of my first). Thanks in advance!

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I think these are wise questions but they ought to be posed to your doctors. I think I would get a specific list of the tests the cardio wants you to have and then pose these questions to him/her regarding each individual test. I have had some tests but not others because my POTS neuro said the results of the tests we didn't do wouldn't change how he's treating me. For example, my cardio had ordered catecholemine blood tests, but she didn't specify the whole laying down, draw blood, stand 10 minutes, draw blood again routine. Therefore the lab just did a straight blood test and I was new to this game so I didn't know any better either. I gave the POTS neuro those results the first time I saw him but he said they were worthless because they weren't done correctly. However, he said he wasn't going to have them redone because clinically I present as hyper-POTS and he therefore would treat me that way to control my symptoms regardless of how blood tests came out.

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That is a good question. I think it depends on what your doctor thinks, and how you are doing. Whether or not you have unanswered questions etc.

I kind of lean towards going with the doctor on this one. He or she needs a good understanding as well.

Personally, I have wished that I had some testing that I have not. My situation is not managed well either.

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I like knowing everything I can about the characterizations of my case of POTS. Even if it doesn't make a difference in treatment now, as research continue to uncover more and more about managing/treating POTS, what I learned from testing will help me (and my doctors) decipher what is applicable to me and what is not.

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