I've been meaning to talk a bit about medical records. It takes time to gather your records, but ultimately it's worthwhile.
Often people find as they are seeking a diagnosis that they end up seeing many different doctors across different specialties, and sometimes several doctors within the same specialty for second and third opinions or for different sub-specialties. What patients are not frequently aware of is what occurs when those release forms are signed and their "chart" or "medical records" are sent from one doctor to the next; most patients assume (albeit rationally) that everything and anything pertaining to their case that doctor A has access to is being passed along to doctor B. This is, in my experience, never the case. Let me say that again: NEVER. There are good reasons for this, and rather than explain why Dr. A can't do that, it's more productive to explain what we as patients can do to compile the most relevant parts of our medical history and make sure they make it to Dr. B, Dr. C, and so on down the line forever without fail.
You do not have to rely on your doctors for this process. You have the right to have hard copies of every shred of your own medical records, including tests, hospitalizations, doctor's charts, surgeries ... you name it, it's yours. Once you have that copy, you can carry it with you to every doctor you see and say "this is MY personal copy, but you may view it and/or make a copy for your own records." Always retain your own copies, so once you've hunted them down, you never have to do it again. Once you get in the habit of getting hard copies, it will become second nature. You'll come to appreciate it when you start to catch mistakes in your chart or things that have been accidentally overlooked. (Did I say "when" and not "if?" If you do this on an ongoing basis and pay attention, you WILL eventually catch something that seems amiss. This is one of the benefits of getting the hard copies of things like test results rather than letting someone just tell you over the phone.)
Let's consider some different types of medical records:
Tilt table tests, etc.--
There are two things you can ask for, the test report which is a summary of what happened during the test and generally about 1-2 pages long, or the actual *chart* complete with *tracings* from the test, which may take longer to get because they may have to dig it out of some mysterious dusty archive of medical records and they may also charge you for the copies and act like you have 3 heads for even requesting it. On the other hand, if you ever want to go see another specialist, it is extremely handy to have your own copy of it as it will not be forwarded as part of your chart to the new doc (only the report will), but if the original doc misinterpreted the test, the new doctor can only really straighten that out properly by seeing the original chart and tracings.
Similarly, if you get records from a loop recorder, you can ask for the actual tracings, not just the summary reports. Likewise, any EKG you've ever had, you can ask them to dig up and make you a copy of the actual EKG; if the person in the medical records office looks at you like you're from the moon, draw them a picture as an example (yes, I've had to do this to get my point across that I don't just want words on a page *describing* the results).
X-rays, CTs, MRIs, etc. can generally be obtained on CD from most hospitals these days. If they're nice, they'll even subdivide them by category for you. Last time I went to pick up a mess of mine, they put everything neuro (neck up) on one disc and everything cardiology (chest) on another, so I knew which disc to show to which specialist and neither would have to weed through unnecessary information. Now that's service! These are often obtained directly from the radiology department of the hospital, unlike the rest of your hospital medical records, so call first and check on that to make sure you know where you're going (also if you place your "order" ahead of time they can get them ready for you to pick up when you arrive). You will also want the reports that go with the actual scans, and these are generally kept in the medical records department so you'll probably have to get those separately.
Blood tests, biopsies, urinalysis, etc.--
If you don't see it in print, it isn't real. "medical errors or adverse events in family practices occur in about one in four patient visits. About 14 percent of the time, the mistake involves a medical test. That’s a rate of one testing mistake per 30 office visits." If you're still not convinced you need to get a hard copy of every test result, research the rate of errors in patient test reporting further. I'll leave you with another quote from the same article. "In about three out of four cases, patients suffered as a result of the mistakes, the study showed. In about 24 percent of cases, the mistake led to delays in proper treatment. In 22 percent of the errors, the mistake forced the patient to spend additional time or money. Mistakes caused pain and suffering in 11 percent of the cases; and 2 percent of the time, the mistake resulted in poorer health."
If you go to medical records and ask for the records from a given hospital stay, what you will almost invariably get is the computerized summary which includes doctors' reports, lab reports, consult reports, intake and discharge forms, etc. It is not, however, your chart from your hospitalization. You'll note that you won't see any EKG strips, you won't see any record of the 3 billion times various people invaded your space to take your blood pressure at all hours of the day and night, you won't see the meticulous notes on your "ins and outs" (euphemisms for what you took in and excreted--important clues on how your fluid balance was going), you likely won't see anything about the time your postural tachycardia set off the telemetry and sent people FLYING from the nurse's station to see if you were dying only to find you at the sink with a mouthful of toothpaste saying "what?" ... and if you're noting a trend here these are some of the very things you might find most enlightening about your hospital stay as a dysautonomia patient: blood pressure, heart rates, if you were running a fluid deficit despite your florinef or other treatment, all that minutia that's too "inconsequential" to make it into the computer summary. Sometimes you will be charged (by the page--can be rather costly for long stays) for a copy of your full chart, and sometimes not. Your best chance of not being charged is to get the chart when you have an upcoming appointment with a new doctor, can show letterhead or an appointment card as evidence of this appointment, and assert that you need the full chart FOR continuity of care with this new doctor. (Use those specific words: "continuity of care." I believe those are the magic words for getting the records for free. But keep in mind, you really want the chart in your hand and not sent to the doctor.)
Surgeries/Major Hospital Procedures--
Generally you are looking for a surgical report that gives a blow-by-blow of what was done and should have times on it (i.e. anesthesia was administered at 11:04, patient was in such and such condition, incision made posterior to the blah-de-blee at 11:06 ...). If any tests were done before/after, of course you want these reports too, as well as your intake and discharge records and anything else they might have from that day. (Remember there might be something in radiology.)