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NARCOLEPSY ?
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DocWils Offline

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Post: #11
RE: ? NARCOLEPSY ?
Kate,
When you go to a specialist, normally there is a form you film out the first visit in which you list your GP and your referring doctor, or there is a referral slip or letter you have handed them with the necessary information, and copies of the study are sent by matter of course to both for their files. You can get copies from any of the three sources. There is no legal reason for any physician or hospital to refuse to allow you access to your own records, although if you are talking about a lab, there may be a fee for the photocopy. Some doctor's offices also charge a fee, but here it is hidden in the general costs of contacting a physician, so I am not sure in the US how that would be fee structured. Don't let it wait too long if you want the data, once it is filed it will be more expensive to retrieve it. Anything left more than a year at a specialist's (unless you are a continuously active case) is moved to a morgue for the next seven years, and it costs more to retrieve that.

However, most of the raw data will be gobbledygook to you, only the report will hold anything of value for you to glean something from. And even though today we have computers to read a lot of eeg data and other data collected for a test like yours, computers that are good at pattern recognition, someone still has to go over the ton of readings by hand to check it, and even if they rely on a computer's reading of events (it will more or less underline areas of concern and the tech will still have to look a them) it still has to be analysed and a report made from that, and that is time consuming. Meanwhile they are working on the next ten cases and working on yours and five previous ones, so you can imagine they are very busy and it takes some time to get it all done. Furthermore, the data produced isn't a short strip, like an ekg, which can be read at a glance - it is very lengthy and takes some time to go through and understand, doing backwards comparisons throughout. And in your case, there are four sets of data to compare, and that takes time again.

I would not seek out the raw data unless you are qualified to read it, or you have someone who is, and are willing to pay the expense. The final report is all you need in most cases, and all you should ask for. Narcolepsy is not that hard to see in the data if you are trained to know what you are looking for, but it is hard if you don't. The report should contain all relevant information for you or any physician. And don't worry about the lab tech missing something in the data - as I said, they know what they are looking for and it would jump out at them when reading the raw data.

One more thing, I have access to my own data because it is my data, by law, not because I am a doctor. And just because I am a doctor, I cannot access another patient's data, even at the hospital where I teach, just on a whim. I would need to be a consultant on the case and need the permission of the patient or their physician to do so. And even though at our hospital everything is now kept on a computer, there are safeguards to prevent doctors from different departments to go "trawling" through files of people who aren't their patients. Confidentiality rules are very strong here, and I know that the same data protections are in place in the US. Your data is yours, by law. The only reason to refuse you the data is the cost or mischigas of retrieving it. They may query you as to why you want it, and certainly will make you jump through hoops to prove you are who you are, but that is all.
12-05-2013 06:40 AM
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me50 Offline

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Post: #12
RE: NARCOLEPSY ?
I got my sleep studies but they didn't include my brain waves, etc. I was okay with that because I was only interested in the actual report, the data plots, the technicians notes as to what time what happened, i.e., what time my pressure what changed at to what pressure. Those things I could understand.
(This post was last modified: 12-05-2013 07:46 PM by me50.)
12-05-2013 08:27 AM
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DocWils Offline

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Post: #13
RE: NARCOLEPSY ?
In all honesty, outside of statistical studies, the US govt, doesn't give a damn about your medical information - it simply doesn't interest them and is of no use to them. I doubt, unless you are a criminal or engaging in attempts to defraud the Government or Taxpayers, that it would be of any use to any of the agencies run by the US government, except Medicare and Medicaid, and they would have access to such information anyway if you were using either of them, Obama or not. All doctors that treat you now have access to your medical records in the US, since you subscribe to the hopelessly useless HMO model there (which, when given the choice in our country, the Swiss voter struck down massively, in one of the few examples of the average Swiss citizen voting wisely and sensibly), and within the HMO the information is shared between all servicing physicians without your consent. In that sense, Obamacare, as you call it, makes no difference at all. Doctors share all amneses concerning patients between that patient's various physicians as a matter of course, and that is world wide practice that helps to build a full picture of the patient's needs and avoids prescribing the wrong or overlapping medications. What you cannot to in the US, either under the old system or Obamacare, is share that information between physicians that are NOT treating the patient.

You insurance company is the only joker in the pack, since they can of course refuse payment on a procedure or treatment, but again, that has nothing to do with Obamacare and has been a problem in the US since yonks. Indeed, if I understand it correctly one of the ideas of the early versions of Obamacare, before it got diluted by the Republican Congress, was that insurance companies would no longer be able to refuse payment for basic treatments.

I would assume the office you were exposed to has been so often victim to insurance fraud that they have developed a paranoia about it, and that is why they wanted a second method of insuring you are who you say you are. But you certainly have the right to refuse them. Not giving your home information, though, is a bit ridiculous - how do they contact you? Where do they send documents to? Moreover, should you pass away, all legal documents identify you by your last known domicile (Mr. X of so and so street). I cannot see why that would spook yo, but the extra photo was bit iffy, I must say. I would bet they've had a goodly amount of non-payers and deadbeats, if not out and out frauds.
12-05-2013 05:26 PM
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me50 Offline

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Post: #14
RE: NARCOLEPSY ?
Well, the doctor's office is who told me that it is a new government regulation initiated by Obama and Obamacare. The staff has also said that their dentist and primary care doc has taken their picture (their primary care doc or dentist was not the one I was seeing).
(This post was last modified: 12-05-2013 07:47 PM by me50.)
12-05-2013 06:17 PM
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DocWils Offline

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Post: #15
RE: NARCOLEPSY ?
I would probably check at another office if it is the case that you need the extra picture, just to be sure, but if you do, then I certainly can't see the harm.

Doesn't really help in dealing with the theme of narcolepsy, though ;-)
12-05-2013 07:36 PM
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sir_sleeps_alot Offline

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Post: #16
RE: NARCOLEPSY ?
Neither Obama nor Obamacare require health providers to take your photograph. If this was the case, healthcare providers in all states would have this requirement as well.

Most likely, your state's legislature is responsible for this regulation because they are the ones who decided how to set up your "Obamacare" system.

(12-05-2013 06:17 PM)me50 Wrote:  Well, the doctor's office is who told me that it is a new government regulation initiated by Obama and Obamacare. The staff has also said that their dentist and primary care doc has taken their picture (their primary care doc or dentist was not the one I was seeing).
12-06-2013 02:04 AM
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DocWils Offline

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Post: #17
RE: NARCOLEPSY ?
And, if you live in a state with a Republican legislature, then blame them, not Obama or the Dems. Not being political, but I have heard all sorts of rants about "Obamacare", most of it either wrong or blaming the wrong people. As for my take on Obamacare, I feel it doesn't go far enough. The Swiss system works far better, and is certainly nowhere near what the American bugaboo of "socialism" or even "liberal" - heck, we are the ultimate capitalists, and make you lot look like communists - if this were Star Trek, Switzerland would be Ferengi Prime. And yet we can set up a medical insurance system that covers most everyone without a fuss.

That strayed a bit into off topic territory, sorry. But yes, I had a quick look at the regs, and found no evidence of them needing to take a separate photo of you. It is a local thing.

Perhaps we should get back to the narcolepsy question?

(12-06-2013 02:04 AM)sir_sleeps_alot Wrote:  Neither Obama nor Obamacare require health providers to take your photograph. If this was the case, healthcare providers in all states would have this requirement as well.

Most likely, your state's legislature is responsible for this regulation because they are the ones who decided how to set up your "Obamacare" system.

(12-05-2013 06:17 PM)me50 Wrote:  Well, the doctor's office is who told me that it is a new government regulation initiated by Obama and Obamacare. The staff has also said that their dentist and primary care doc has taken their picture (their primary care doc or dentist was not the one I was seeing).
(This post was last modified: 12-06-2013 07:02 AM by DocWils.)
12-06-2013 07:01 AM
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zonk Offline

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Post: #18
RE: NARCOLEPSY ?
(12-06-2013 07:01 AM)DocWils Wrote:  Perhaps we should get back to the narcolepsy question?
Good idea. Kate also posted here
http://www.apneaboard.com/forums/Thread-CPAP-CENTRAL-APNEA
12-06-2013 07:21 PM
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Kate Offline

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Post: #19
RE: NARCOLEPSY ?
I was genetically tested for narcolepsy and it came back positive. Why oh why do they put you through that terrible mslt test? It was torture and it was not definitive. Genetic testing is just a blood test.

:Using cpap then vpap since Feb.2013,
Kate
01-22-2014 01:47 AM
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Post: #20
RE: NARCOLEPSY ?
(12-06-2013 07:01 AM)DocWils Wrote:  And, if you live in a state with a Republican legislature, then blame them, not Obama or the Dems. Not being political, but I have heard all sorts of rants about "Obamacare", most of it either wrong or blaming the wrong people. As for my take on Obamacare, I feel it doesn't go far enough. The Swiss system works far better, and is certainly nowhere near what the American bugaboo of "socialism" or even "liberal" - heck, we are the ultimate capitalists, and make you lot look like communists - if this were Star Trek, Switzerland would be Ferengi Prime. And yet we can set up a medical insurance system that covers most everyone without a fuss.

You are comparing apples to oranges. Compare the US to all of Europe. Compare Switzerland to Alaska. Rolleyes
01-22-2014 02:47 PM
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