Do you have all your med records?

[NYJenn]

I just got reemed out by a "friend" because I was not prepared to recount a 10 year history of my MS to a new doctor.EVERYONE has a folder with all their tests? Really? I did the best that I could on the fly. They told me what to bring, recent medicine. What do you think?

[wkikta]

No, they have a much better system at my Doctors. I will always rely on them for the Records, and they are fully Digital. You don't need your paper records, even for SSDI since they will get them from your Doctors.

[poohb3ar]

only thing you should really have to know is

major medical conditions and who/ where/when dxd them
hospitalizations
medications
surgeries, etc.

there was no reason to get reemed out. sorry you had to go through that!
some people can be so insensitive, praying things work out at the drs for you. and YES they keep excellent records and if you want a copy you practically have to have a warrant and pay them per page for them!
so, no, most people don't have ALL their medical records.
i just happen to because of EEOC, ADA and SSDI court cases.
and believe me, you really don't want all of it which includes the drs. personal notes about you

take care and God bless ya!

[Waydwnsouth1]

Well I guess I am one of those anal few that have their records. All I really have though are radiologist reports, blood work and various other test interpretations. I also have all my MRI DVD's. The docs have used the DVD's and actually read the impresssions of the MRIs. I did not have to spend a penny for them. I just called the doc/hosp then went and picked them up.

I did this mainly for my use. I will sometime go back and read things and compare them to what the docs are saying now. I also did it because I was going to the docs so often and having so many MRI's that when I changed docs I had documentation.

[heliotrope]

Yes, I do. I've had doctors fail to read my records or to share information when appropriate. I've had doctors try to do the same tests twice. Having the medical records in hand saves a lot of issues.
You also can "catch" the doctor's comments. Trust me, I've had doctors record info (or impressions) that wasn't remotely accurate and would make a difference in how I was treated by another doctor. You want to know about these things.

[deescee]

Recommend you keep your own notes

I have moved three times and had various doctors since I was dx'd over ten years ago. I've seen some of the records, and there are definitely mistakes in them. My suggestion is to at least record the drugs you have been on, your side effects, why you no longer take the drugs. Then maybe you should record the dates you saw which doctor and brief notes on what occurred on that visit. I wish I would have done that for my peace of mind. Yes, the records are out there, but what happens if they get lost???

[onlyairfare]

I agree that it can be handy to have copies of key records - MRI's and reports, hospital discharge summaries, lab test results, especially if they are abnormal. If you have insurance that wants you to use cheap generic drugs before they cover expensive brand names, you should definitely have the dates you used the cheap drugs and why they didn't work, as that will be necessary to get coverage of the brand name drug you need.

I too have moved many times since my diagnosis, and I have also changed doctors if I didn't like one and went to see a new one. For my most recent change to a new neurologist, due to a move to a new state, I wrote a one page summary of "my case," which my new doctor greatly appreciated - and I could do that because I had kept quite a few of my own records. Much better than having to read through many pages of records from many doctors in 6 different states.

[cosake]

Although I don't have any of my actual medical files, I have kept a medical history since I was diagnosed with MS.

I have a text document that I keep adding to, with the date and notes about my doctor visits, tests done, test results, medications started and why, medications stopped and why, any symptoms I have had, etc. (Anything medical-related, not just MS things.)

It's not perfect or as good as having the medical records, but at least I can go back and review them if I need to refresh my memory or meet with a new doctor. I print out the most recent pages with my symptoms when I have an appt. with my neuro for him to put in my file.

[agate]

I have all of my medical records that I could get. I'm in favor of getting all of them if you can unless you're sure that they won't be needed any more.

One problem is that doctors' offices don't keep them very long. A couple of times I've been told they keep them for only 3 years.

Another problem is that when I got my medical records, I found all kinds of problems with them--mistakes, test results that weren't there.

Sometimes they were in such a jumble, out of order, that I don't see how anyone could make much sense of them.

Doctors tend not to look at your medical records. They say they want them but do they look at them? Not many do.

I think they're making a big mistake in this respect, and I'm going to keep on hanging onto my medical records just in case a question comes up.

[jumpinjiminy]

I have most of my recent records because doc wanted me to go to Mayo at one point. You'd be surprised of the inaccuracies, things that showed up that nobody told you about, etc. Once everything goes electronic, it will be easier.

Recently I picked up a copy of a sleep study that was done. The doc only had the report and said it said I had grossly abnormal sleep architecture, but he was too busy to go into the details. It turned out I had no REM sleep at all during the study. I read this could be from medications, so I've stopped all the meds that can cause this and I've since been dreaming up a storm.

Not only is it good to have them in case you need to see a new doc, but it's also good to manage your own health issues. They don't tell you everything at an office visit.

You can also find out which docs view your information as medical and which ones view them as psychological. This helps in choosing docs that are going to take your word for what's happening.

[gomer]

I Wish..........

I had EVERY medical record going back at least 50 YEARS!

Tons of stuff missing, unavailable etc. Accurate records? Surely you jest! Missing lab results, false information in one recent record (doc made false claim I had tried a drug with no relief that I NEVER in my life took, laying foundation to justify a knee replacement, read new $$$$$ office to pay for)

My old ENT had in his records, "CNS issue", "investigate if warranted".... ya read like a textbook case of Dawson's fingers galore! Guess a couple falls in under a year, requiring surgery BOTH times was not ENOUGH, to warrant checking it out.

GET YOUR RECORDS.......
.............. if only in case you need then LATER!

Gomer

[hjames25]

I work for a hospital and every doctor is required to go electronic. That will be great for new doctors.

However, I have all my records for the past two years. From every doctor I've seen. I have all my tests, etc.

I haven't had problems with doctors, my problem has been with my insurance company. I'm soooo glad I had my records because I was able to contradict the claims adjuster while I was on the phone with her!

[maximumlite]

I did not have a copy till my Soc Sec lawyer sent me a complete copy and in 1997 the MRI says clearly in 2 different places I had MS only to have the neuro change it to a stroke, was also my first big Flair but no DX till this year also 4 abnormal spinal taps and 3 neuros who each had an opinion, one even had a DX of neurosarcodosis.

The big thing was a DNA they did that says I have some rare mutation with high morbid mortality rates that occurs in the 5th and 6th decade of life, now I think that is why they don't want you to have your records as I have'nt slept all weekend and 3 weeks till I see my doc, as soon as I can get in and am totally freaked out as I turn 50 this year and my mom died at 62 from undetected cirrosis of liver and this DNA mutation has to do with heavy undected iron deposits that affect organs, almost wish I never saw them now

[kikiblue]

no

I don't keep all of my medical records. The file would be too big to carry. I have started keeping a medical diary though. I can't remember when I have had anything done and this way when I go to a new doc or have tests done I can accurately fill out the paperwork. I do have a list of all medications, dosage and what I take them for and my PCP and neuro's name, address, phone and fax numbers - never leave home without it!

[freeinhou]

I have most of my records. Even a copy of the office notes with my original dx in 1988.

I don't see a neuro regularly (no DMD) so it's helped in the past when I show a new doctor some of the records. We've moved a few times - Ohio-Florida-Texas, so I need records.

MRI's are easier now because they're electronic, but I still have a few sets of old films. I also keep a medical log book. Which reminds me - I gotta update it for last week...

I'm pretty anal about record keeping. I still have alot of my notes when all the drugs were in trials in the early 90's. There was a group of us MS'ers on a bulletin board that shared info on the trials. There were about 25 drugs.

Tom