New Doctor, More Tests

[Rachel]

Hi everyone,

I need to get in to see a new doctor and am looking into the Autonomic Disorders and MVP Center in Birmingham, AL. On my first visit they want to do an echo, stress test, and a ttt. I've had all of these in the past, but it has been a while, so it might be wise to do them again.

I'm not sure about the stress test, though. I am very weak and fatigued. In all seriousness, it would only be a matter of minutes and I would fall off of the treadmill. Do you think I really need to do the test? Or can they get the results they need if I do it for just 1 or 2 mintues? If I have to push myself too far physically then I will be wiped out for 2 weeks. And I don't want to do that!

Also, the doctor isn't actually present for any of the tests. She'd be in the office somewhere, but not overseeing the test. In the past I have always had doctors to oversee/perform these tests. I didn't even know that there were places that didn't have their doctors oversee the tests! Considering the state of my health, is it wise to go through a stress test or a ttt without a doctor in the room?

Any advice you can offer would be greatly appreciated. My health keeps declining and I need help fast, but I want to make sure that I'm getting good care.

Thanks,

Rachel

[P SUDIK]

Rachel, I sure hope you get the help you need soon.I wish I did have some words of wisdom for you,but going thru the same thing,I need to see a new doc also,and cannot be seen until I have ttt again and several others. I am dragging my feet. Like you , after all that testing I am pretty much useless and ill for days.

Rachel, this is Pat again,I sent your message, before I was done ,sorry I do have one suggestion that may help?? I had the stress test ,that get an injection rather than go on the treadmill,is that an option for you? It is still not fun but maybe easier for you. lLots of luck and love Pat

[MomtoGiuliana]

Will you have someone with you for these tests who can be your advocate? I think that is important if you are feeling poorly. But, otherwise, I would go through with the tests so that you can get as good a diagnosis and treatment plan as possible--even if you have had the tests before. Probably the person administering the tests has seen all levels of disability with POTS and is skilled enough to help you and to stop the test if and when needed. I know I have been at a point where a stress test would have been laughable as I could barely stand. But, if you can do it even for a very short time, I would think it would be useful data to have.

Katherine

[Dizzy Dame]

Hi Rachel,

I'd suggest telling them your concerns before you begin your evaluation. Also, don't overdo it. I used to kill myself with diagnostics, but now I let myself stop if I start feeling too bad...which I feel has really helped me take better care of myself.

Good luck! I hope they can find some new answers/treatments for you that make your life better!

Hugs,

Lauren

[mkoven]

Because of my joints, I can't do a regular stress test. Instead, they do a chemically induced one--with dobutamine. It was strange, but I tolerated it okay. Would that work for you?

Michele

[Rachel]

I've never heard of the chemically induced stress test. How exactly does it work?

[jhjd]

I go to the MVP/Dys center in B'ham, and I really like it. It's definitely worth being tested again by them, since they know more what to look for- when I went, they did a 'spot' echo, even though I'd just had one done, and found MVP that the other echo missed. (My first one was just a bog-standard lying down test where the technician didn't really take seriously that a healthy looking 24 y/o could have anything wrong with her heart.) And on both the stress test and TTT, they repeatedly asked if I was okay and let me know I could stop whenever, then helped me down off the treadmill (cause I was dizzy), got me water, helped me sit- all just as a matter of course. Little things, I know, but it was nice not to be treated like I was crazy for being lightheaded after the stress test or like I was a burden to the staff.

As for the doctor supervision thing- I've actually never had tests like that supervised directly by the doctor. Don't know if your doctors are really good or mine really bad, but there you go! My previous echo was just done by a technician and then I had to wait for days for the results (other then what he told me). So I was pleasantly surprised by the fact that the doctor gets your results and interperts them with you immediately.

Finally, I like it because they 'get it' like other doctors don't. The entire practice is built on this speciality, so the doctors, nurses, staff, and other patients make the office feel very welcoming. They listen to your concerns and take a helpful 'whole life' approach to making you feel better. But I've never felt judged for 'backsliding' on lifestyle stuff like at other doctors I've been to. For example: they're real big on how caffeine is bad if you have mvp or dysautonomia. While I've cut back, I haven't cut it out entirely- I took the bar this summer, and there's simply no way to get through it without some! When I told them this at my last follow up, the Dr. said 'Oh, I understand that! But it's good you've cut back- keep trying to eliminate it and stay hydrated.' Other drs. I've been to act like if you don't just live perfectly healthy, it's 'your fault' you're sick- like you can be cured if only you'd follow the food pyramid!

Good luck!

[mom4cem]

I've been to the center in the past also. I think it would be good to go, might just offer another perspective. As for tests, when I get tested I have only the tech in the room but the Dr. checks in, and if they need him, he is just in another room checking someone else out and can run right in. I guess each office does it differently.

I'm sure whichever dr. you are seeing, is right in the next exam room etc. I never had the dr. in while I was doing the exercise test either while down in Ala..

Which Dr. are you scheduled to see?

[Rachel]

Thanks everyone for your feedback. I appreciate it very much.

Katherine: Yes, my husband will be with me. And he is good at advocating for me if I get too fatigued and brainfogged to do so myself.

Lauren: I'll take your advice and try not to overdo it on the stress test.

Pat and Michelle: I'm not sure if the chemical stress test would work for me or not. I'll have to look into it.

Mom4cem: I am scheduled to see Dr. Moore in March.

I do have one more question for anyone who has been to the Dys/MVP Center. Is there a good (and cheap) place to stay nearby? I will need to stay for 3 nights probably, just because early mornings, traveling, and tests don't mix to well for me! I do have insurance to cover the doctors bills, but we don't have the money for all of the gas, food, and lodging for 3 nights/4 days. I called the Ronald McDonald house, but they only take children under 18. But if you know of any other place like that that takes adults, please let me know. I need health care, but don't want to go broke getting it.

Thanks,

Rachel

[cardiactec]

Hey Rachel,

my suggestion is that you really try to do the test and for as long as possible. typically, with the stress test (stress echo), we are looking to get the heart rate up to your max capacity (typically this is 220BPM minus your age) in order to definitely see how well the heart functions (with echo imaging, not just a general stress test). usually one to two minutes isnt long enough to **** the heart properly....

...at your age though, i think more definitive answers would come from just a regular echo and/or tilt because typically stress testing is performed mainly on older patients to assess for coronary artery disease........people in their 20's can have coronary disease but it is rare. the heart function can be assessed with just a regular echo....

did they give you a specific reason as to why they wanted to do the stress? abnormal ekg? bloodwork? if it is just a stress test, i would skip it. stress testing along usually doesnt reveal much info - although the continuous ekg monitoring may pick up arrhythmia problems or show poor perfusion to coronary arteries by specific waveform changes that occur on ekg when the heart is under stress....

hmm, i have always had a doc present in the room when i have had stress testing/stress echo. at the hospital i work at, and at the even bigger hospital two blocks from the one i work at, a cardiologist MUST BE PRESENT during stress testing, stress echo, tilt table, etc......so i think it is odd that just a tech would be in the room.....if you dont feel comfortable with this, and i certainly wouldnt, i would ask that a doc be present. it's as simple as that. i am amazed that many facilities would just have a tech in the room. is ATLEAST a nurse in the room??

let us know how it goes!

angela.

[Rachel]

Hi Angela,

Thanks for your reply, explainging some things, and for expressing your concerns.

No, they didn't give a reason for doing the stress test, other than it is just one of the tests that they perform on every new patient.

I'll have to call the place back and see if I can speak to a nurse and ask her some questions. I've spoken with the receptionist, but of course she doesn't know enough to answer questions.

Rachel