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Yearly And Biyearly Checkups...


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Hello, all. It has been a while since I have posted. The good news is that I've been doing great the past year and a half. Yeah, I still have "episodes" and I still have my triggers, but I've learned to deal with my dysautonomia and MVP. I'm graduating from college in May and hope to work full time starting this Summer as a dental hygienist.(God willing I pass the 6 hour national board exam).

Anyway, my question is: I have been doing great at my last few Dr. visits. My Dr. knows of my progress. My doctor does do yearly and bi-yearly tests, however, just to keep a tab on my condition and the progress I am making, regardless of the fact I'm doing "well". I have pretty good insurance, but still, the tests are expensive. She does a yearly EKG and TTT and every other year she does the stess test and echocardiogram. It kind of seems useless to me that these tests be performed so often, considering nothing has changed.I don't want to sound ungrateful; after all, this is the doctor that has helped me find the correct meds and get me back on track. She is great and I love her and her nurses. I also understand that any chronic condition requires a visit with the doc to keep tabs and to refill meds as needed, but it just seems a little excessive.

How often do you guys get these kinds of tests, and is it neccessary?

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First....A TILT EERY YEAR!!!!!!!!!! Most say one positive one is all you need. Do you have cardiac issues. I have an EKG 2x year, I have a cardiac problem. A stress test? I would ask her/him if its not overkill. I think that a 24 hour urine catch is more helpful. Comparing volume, sodium etc. Personally I would just ask if this could be every other time? Congrats on school.....Miriam

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Let me correct myself. The TTT and EKG are also bi-yearly. She alternates the tests every year. One year I will do the TTT and EKG, and the next I do the stress test and echo. Sorry for the mistake. But still, it does seem like overkill to me. Especially to my pocketbook. These tests are thousads of dollars, and I just don't understand what they are telling her, except what we already know. I have dysautonomia, which obviously is no longer incapacitating me, and slight MVP, which has NEVER been a problem, or even caused symptoms. The MVP is actually quite benign. I'm going to school, exercising regulary (cardio and weights) and function very highly on most days. My meds haven't changed one bit in about 4-5 years; even the same dosage. No bloodwork or urine is taken at these visits, and the face to face visit with the doctor is short and sweet; about 15 minutes, tops. The last visit after my Echo, she said, "well, you still have mvp." Ummmm...I didn't know that it could vanish. Either way, it has never been a health concern at all, and I have no heart problems or other health problems. I drive an hour and a half to the visit, stay there hours for testing, and end up paying hundreds of dollars (after the insurance). My last visit was the echo and stress test. The stress test was stopped by the staff because I was doing so GREAT there was no need to keep going. The nurse said I scored 120% on the stress test, and "I've never seen anyone with dysautonomia go more than a few minutes on the treadmill." Just like last year I told the doc that I'm doing great.

I'm just wondering, does anyone else that has recovered as well as I have this type of rigorous testing done so often? What are the tests telling her that we didn't already know? I thought the TTT was for initial diagnosis only. Why the echo and EKG? I'm not even being treated for the MVP because according to her initial diagnosis, "the mvp is very mild and although it does exist, this isn't causing your symptoms."

I hate to sound ungrateful because this doctor listened to me from the beginning, took me seriously from the start, and obviously has a lot to do with my recovery because she confirmed my diagnosis and prescribed the meds. She has a great bedside manner and the nurses are great. I always get great response via email or phone if I leave a message, and I know that I do have a specialist on call if I do get worse.

It is just that money is really tight right now since I am not working, and it is getting harder and harder to rationalize many expenses. I was just wondering if I could see a local doctor for my med refills as needed and a quick checkup. But I don't want her to "fire" me as a patient completely for failing to meet the criteria as a cooperative patient. I fear if that happened than I won't have a specialist to call upon if I crash.

Am I being rediculous? How do I broach this subject with my Doctor without sounding ungrateful and disrespectful?

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The doctor who diagnosed me said there will be "remissions". As far as the testing. Two things. 1. Your insurance company sees this pattern and in thee long run not good. 2nd. On my soapbox. So many people cannot get any medical care at all. And your doctor is using the resources, not for someone in desperate need. You are an ethical person. Talk to your doctor and you can do a literature search here. And there are articles to reference. Regarding testing. Good Luck. I admire you for being so aware of these issues. Miriam

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It's great that you found a doctor who is knowledgeable about ANS disorder. Your concern about testing is valid. Her reason for testing an asymptomatic patient is unfortunately financial. If you or your insurance are paying, the doctor will be ordering. This is not to cast doubt on your doctor; rather, it is the financial predicament that many physicians in private practice find themselves these days. Understand that as a patient, it is ultimately YOUR decision whether to get tested or not. You might want to say to your doctor that you would "prefer" not to get tested right now that you're doing so well. Obtaining expensive tests that are unnecessary increases the cost of health care for everyone; this is partly why insurance companies try to contain the cost by denying others the testing or medications that IS necessary.

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Thank you, Miriam, and I am glad to hear from you, doctorquest. I think I can manage to find a doctor around here that can refill my medications. Unfortunately, I don't have a good feeling about confronting a doctor about unneccessary tests. I was told on my first visit that this is how I would be tested on a regular basis to keep track of my health issues. At the time I was sick and vulnerable, and terribly uneducated. I had no clue if that was normal or not.

I just really would hate to lose this doctor, and then find myself in a situation where I need a specialist if I do crash and need further testing and care. There aren't many doctors around here that even know what this disorder is, much less do they know how to test or render the proper treatment. But I can not rationalize spending thousands upon thousands of dollars on testing for no reason.

You also made another good point, Miriam, and one that I have already considered. My insurance company is going to be paying thousands every year for this testing. They aren't going to be happy about that at all, nor should they be. At some point they might begin to question the validity of all of the tests. I agree it is frivelous and unneccessary testing that makes healthcare go up for everyone.

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I've seen a few cardiologists and they all give me an EKG the moment I walk in the room, whehter I saw them a week ago or a year ago. I think that's pretty standard practice - maybe a liability thing. Other than that, my docs like to do a blood test every year, which I like. But they are pretty willing to renew prescriptions without my having to go in.

My doctor tells me to come twice a year for checkups, but if nothing is wrong I usually only go once a year. Same with the dentist - I was diagnosed with minor periodontis a long time ago so they tell me to come for cleanings 3 times a year. My insurance only covers 2, I only go twice and periodonits has not come back. I think you can partially avoid the confrontation and the expense just by not going as often as they tell you to - unless you feel something has changed.

If you don't want the tests, you could make it a money thing and just say that you'd prefer to have just a checkup without the tests because you can't afford it and that you would prefer not to repeat the tests unless things change. I'm sure that other patients request this, especially if they have to pay out of pocket.

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Fortunately, my main POTS doc is a great guy who gave me a big hug and sent me on my way after my last visit with him in January. I?ve been doing really well for the last year or so and on my last few visits did little more than chat with him about intermittent symptoms. He said there was no reason to keep coming back for follow-ups since I was doing so well and that if there was a change, he?d be happy to see me ASAP. What a pleasure to have a doc like this.

I?ve got another one who?s the complete opposite ? an appointment and tests every six weeks. The last few times I tried explaining that I?d like to cut down on the visits/tests, but he says its necessary to monitor my condition. He won?t let you leave the office without making the next appointment ? its very intimidating. Last time, I made the appointment, left and went home and cancelled and have not re-scheduled. I?m sure he won?t have a problem seeing me again if/when I make another appointment but I can sympathize with how you feel.

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None of my doctors have ever had me repeat a test unless my symptoms have changed enough to warrant a new test. I've had a holter monitor twice, once in 1995, and once in 2005. I had an echo done in 1995, and then again in 2007 because my doctor found a heart murmur (which had not been heard years before). I've had a sleep study done twice, but only because my doctor needed additional information. Other than than those three, I've never had a major test repeated. Oh yeah, and EKGs have been repeated some over the years. Usually I have to get another EKG every time I see a new cardiologist.

Some of my specialists do/have done supine and orthostatic hr and bp on each visit, but that is done by the nurse, is very simple, and not an extra expense. My PCP does routine blood work once a year (CBC, thyroid, etc).

I definitely don't think it is necessary to have major tests repeated unless you have a change in symptoms that indicates something new may be going on. It's expensive, and considered unnecessary by most doctors.

Rachel

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