I'm sorry to hear about your experience. I guess it's all water under the bridge as long as you're getting good care now. Hopefully your current docs have access to all the old records too.

I've had a couple of similar incidents to yours. First off, I'm not diagnosed with MS but I found out from looking at my medical records that MS is what they are focusing on. All my neurologist told me was that she didn't know what was at the root of my problems and didn't want me to worry about anything. (The records on the other hand looked really alarming. For example, the doctor said I had "a few small spots" in my MRI and CT scan with dye, but the report said I had a "bright and active 7mm lesion".)

Mailing your records to you like that was probably a violation of policy or even HIPAA rules, but there may be some fine print in some of the paperwork you filled out when you first were treated that may allow them to do that. In my case a records clerk accidentally handed off a printed copy of my entire medical record to the wrong person and never got it back. I eventually got an apology but no explanation for what went wrong.

I hope things get better for you soon.

I would still report him to the medical state board!

Crystal, it can be alarming what you find in your chart. I too am still reeling from reading my PCP reports about my visits. It is said over and over on this board-'get your records'! From this point forward, I am asking for the report of every visit, from every dr. I am hoping that it will help me be much more efficient in determining the skills of my dr.s. It was amazing to me what my dr put in the reports vs what really happened during the appt.-and how much of the information in there was Wrong or simply not true.... and then when you think about these reports being 'shared' -- it matters!

I think everyone who is ultimately diagnosed with ms has the experience of seeing a doc that didn't get it right...at least i did.

i think legally you have the right to write something and request that it be stored in your records.

the medical files are legal documents they cannot be changed but you can request a statement be added to the file.

i thought about doing this with a doc i went to because i was having trouble competing normal walks and she spent a lot of time listening to me then gave me a prescription for an anti depressant===i was so mad, i never filled the prescription, i knew this wasn't depression. then 2 years later i was admitted to the hospital with possible stroke or ms. spent a night in the icu. i was so mad at that doc who just blew me off--i thought about sending a statement , stating how it turned out and requesting that it be included in my file, which i have the right to do by law. maybe saying somehow that she was WRONG!

i ended up on ssdi and medicare so i thought it doesn't matter so i didn't do it & i recognized it's a pretty common situation for people eventually diagnosed with ms.

there is nothing you can do to the doc. his license to practice medicine DOES NOT require he get it right all the time--so that is a dead end. Just that he pursued the a likely causes. it sounds like your doc did that and the one i saw who gave me an AD did too, there was no negligence in either of them. they just didn't get it right, the pursued what they thought was a likely cause...they just didn't get it right.

what year did you see him? medical disclosure via the hippa law of 1996 has advanced patients right a lot. patients didn't have a lot of right before 1996 & hippa. 1996.

i think it something you and i just have to live with. if transferring your files is an issue for you ask that a statement be included in it...if its just for SS they know this happens in MS and overlook early files like that.

it helped me to find and read this experience to understand how much medical information has changed.

http://www.dailymail.co.uk/health/article-429103/Doctors-knew-I-MS-11-years-told-me.html

YOU CAN REQUEST THAT YOUR MEDICAL FILE BE AMMENDED... by the rights given to you concerning your medical records by the hippa law of 1996. medical records can't be altered because they are legal documents...but they can be amended.

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/medicalrecords.html

for me the thoing thast made me so angry is if she had pursued ms i would have had time to get my finabces in order as it was i quit a secure job to take a lesss securew job closer to my hometown/family...do you think i would have risked secure employnent if i had kmown i had an incurable disease like ms hanging over my head?

i wanted to sue the bastard, for what oi lost in ltd which i had in my old job, didn't have after i lost that less secure job i took not knowing i had ms.

i knew the exact $ amount i want to sue in a malpractice law suit.

its just that ms is such a flaket disease its difficult to prove negligence or anything like that in a court of law, that's why i save a link to that experience where a financial settlement was reached about not diagnosing ms.

not all possibilities, just possibilities that could reasonably expected.ms is a rare, difficult disease to diagnose with many mimickers, including psychiatric. a rare disease so it can't be reasonably expected...pretty much you have no legal recourse with ms.

I'm so sorry that there are others who have been in similar situations, it's horrible that it's that common.

Nnyl1----I read the links. Theraputic privilege my rear end (feel free to substitute the word I'd like to use), deliberately withholding information should never be considered okay. Making us think we're crazy and that no one believes us is supposed to be better than a diagnosis?! THAT'S crazy!

Crystal, i think the most you can do is ask the file be amended with a statement like ...'symptoms continued, failure to disclose abnormal findings prevented subsequent medical care from being pursued...current status is ? as recorded by subsequent physicians ?.

at least you can vent your spleen and feel like you have done something...maybe it will cause that doc to be more careful about disclosure in the future.
unfortunately, i think that is just reality.
if you filing for ssi, you have the 2nd strike of not having enough money to change it...the older i get the less i believe that money can't buy happiness. :(

just wanted to start by saying that i love the VA hospitals and i would be in deep poop w/o them. but this nasty little doc in seattle refuses to give me my results, of emgs, mri and spinal tap, unless i go back to seattle, i live in the remote mtns of idaho, she had told me that i may not have MS and i said "crap" and she says "oh, you would like to have MS?" i was too tired to say "NO you beeacth, i have been taking copaxone sfor 3 years and thought i knew why!!!" this was last september, and she did remind me how expensive the copaxone was and how the VA was paying for it. REALLY? so i just left her a phone mesg..."since i cannot get the test results unless i take a long exhausting trip to see you face to face....why don't you just let my PA know if i should continue to inject that terribly expensive med, that i am NOT paying for, and i will just fill in the blanks....." that was in March,,,, have not heard a word. Some docs just think they are SO COOL that NO ONE should doubt or argue or have their own damn opinions......thanks for listening to MY vent...love and light to all, leslie joan in idaho.