Get your medical records!!

[Just J]

I would like to urge anyone who is awaiting dx to request copies of their med records from any doctor who you have seen. Read them, study them, save them. My husband is preparing for appointment with Johns Hopkins and in doing so we have gathered nearly 100 pages of medical records from 4 - 5 doctors. We spent a lot of time pouring over the details and it is a wealth of information. From things that have been ruled out like lyme disease, to things that are still a consideration like MS and HSP, flex results, MRI results, etc. We thought MS was NOT being considered anymore and didn't even know about HSP!!! Doctors do not have the time to go over every detail with you so your records become an invaluable resource as you go through this process.

[awieleba]

do they put things in there that are not discused? I grill my neuro every time I see her. I bring up all the differnent dx that could be out there and we discuss them, so are you saying I could learn something new?

[BethU]

Originally Posted by awieleba

do they put things in there that are not discused? I grill my neuro every time I see her. I bring up all the differnent dx that could be out there and we discuss them, so are you saying I could learn something new?

Yes, you can learn things that you may not have discussed or even thought to ask about when you talked to your doctor in person.

Even more importantly, having copies of your records is vital for your health care in the future. It can take a loooong time sometimes for new doctors to get records from previous ones. If you have copies on hand yourself, you can speed up the process.

Finally, your memory of everything you discussed with your doctor and what the doctor told you may be faulty. It certainly will fade over time, even if you take notes. Do you remember the dates of all the tests you have been given? Do you know the results ... not just whether the test was "normal" or "abnormal," but what the actual numbers were?

I strongly agree with JustJ ... obtaining and keeping copies of your own medical records is a must. And I take notes during doctor's visits, and keep those too, because sometimes what a doctor is telling you (or what you think he/she is telling you, or what you hope he/she is telling you) may not be the same as what goes into a report.

BethU

[Just J]

Originally Posted by BethU

Yes, you can learn things that you may not have discussed or even thought to ask about when you talked to your doctor in person.

Even more importantly, having copies of your records is vital for your health care in the future. It can take a loooong time sometimes for new doctors to get records from previous ones. If you have copies on hand yourself, you can speed up the process.

Finally, your memory of everything you discussed with your doctor and what the doctor told you may be faulty. It certainly will fade over time, even if you take notes. Do you remember the dates of all the tests you have been given? Do you know the results ... not just whether the test was "normal" or "abnormal," but what the actual numbers were?

I strongly agree with JustJ ... obtaining and keeping copies of your own medical records is a must. And I take notes during doctor's visits, and keep those too, because sometimes what a doctor is telling you (or what you think he/she is telling you, or what you hope he/she is telling you) may not be the same as what goes into a report.

BethU

This is absolutely correct. Ater 3 yrs and half a dozen doctors it is difficult to remember everything and YES we found info in the doctors notes that we either were not told or simply forgot due to information overload!!

[liz]

I have been collecting my medical reports as I go in anticipation of needing them for an eventual disability application. I'm glad that I have. One practice where I was diagnosed has since disbanded. It would be a nightmare trying to get the records I will need for a disability application from that place now.

[BethU]

Originally Posted by liz

I have been collecting my medical reports as I go in anticipation of needing them for an eventual disability application. I'm glad that I have. One practice where I was diagnosed has since disbanded. It would be a nightmare trying to get the records I will need for a disability application from that place now.

That happened to us, too, 10 years ago. Our HMO suddenly went out of business, with no warning, and no one to contact. Just ... gone! Bankrupt. No way even to contact our doctor. Not even a recording on the phone ... just "that number has been disconnected!"

Six months later I saw a small notice in the paper that patients of that HMO could retrieve their medical records from a big storage company in town, but it was just luck I saw the notice. No one from the HMO ever contacted the patients. We had to jump through many hoops and it took another six months to actually get the records. Since then, I get a copy of everything!

BethU

[olly]

here in the uk unless you have private health insurance you do not get to see or keep medical records.
you can make a request through your gp but have to pay and when i asked about this my gp said they can omit anything they don't want you to see,this sucks.
take care.
caroline

[awieleba]

Thanks,

I have copies of all the tests ran but notes. I dont have anything from wayne state yet, I will get them on the 27th.

april