Advice Please - Doctor Wanting Other Doctors Medical Record

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I could scream. I just received a copy of my Primary Care Doctors notes from my most recent visit. Why does it seems many/most doctors word things and take things out of context and make you seem like pysch when it's not? Is this done with every condition or only some such as ours?

Probably not, if we had something like cancer I dont we'd have doctors trying to psychotize (it that a word?) our illness.

Before I had ME/CFS, my doctor in San Francisco referred me to the emergency room because she was closed. The doctors in the ER were questioning me, how many times have you been to the ER, as if I was a person that liked going to the ER. Thankfully I've only had to go a few times in my life, but seriously what if I had to go more because the doctor's office wasn't open and the concerns warranted it?

for that reason I only ever go to the ER if Ive had to go by ambulance as Im afraid they will otherwise play down how I am so now only go there if extremely sick.

I have been by a previous dr (though not at hospital), been treated before like I was an attention seeking patient so due to this I've often avoided going to hospital when I should of done so (I even had a borderline personality disorder diagnoses slammed on me in which I think was partly due due to not being believed Im very sick.

My last decent dr was having to try to encourage me to call an ambulance when I need to do so.. Ive risked my life at times by not calling ambulance when I should of done eg when getting a severe allergic reaction and had my mouth swelling up all cause I try hard to avoid having to go to hospital, other time I was on the floor in a heat wave unable to get drinks or go to the loo for near 24hrs but was in no mood to call an ambulance due to how I can be treated at times so instead just went to sleep in the heat wondering if I would die.

Another time I was coughing up blood for about 5 days and didnt ring ambulance or see a dr (fortunately I did recover from that severe cough but it was probably double pneumonia on that occassion to which Ive been in hospital on a drip before with).

I do still ring ambulances and times and do go to hospital often but if Im not mentally/emotionally strong enough at time which I need to be due to how they can be around ME/CFS, I still sometimes dont ring one when needed.

I feel like I need to be so guarded with every word that comes out of my mouth at the doctors visit. It's hard to do when I'm so fatigued, fuzzy headed and pushing to make as much happen as possible in that visit because I can't follow up . And on top of that try to respond to any way that they are suspecting or insinuating things that aren't true about me.

I know exactly how you feel about it. I have no patience left to deal doctors insinuating things though it still happens. When something like that occurs I will no longer ever go back to that dr. I think of it this way now days.. you are paying the doctor to do a service for you..so how dare they go and insult you!! We really shouldnt have to put up with that.

For me to try to correct the notes would take too much explaining which could/would probably make me look even worst. There's so much there in the notes that I find troubling and that will cause me problems yet explaining will make me look bad too with some of it. I have too much other in my life that can't be tended to as it is.

same issue here. I even got a wrong diagnoses of borderline personality disorder in my records now on top of everything else.. and Im too ill to go and see specialists to get this wrong diagnoses off so it just adds to the crap there which further adds to the likihood that I can end up being treated badly.

Thou mistook Aspergers (which I now do have an offical diagnoses for but didnt at time) and ME/CFS, food and hormonal issues which were giving me mood swings due to hyperinsulinemia (which wasnt known I had at time), premenstral dysphoric disorder (PMDD which I do have a diagnoses of) and situational depression and feeling suicidal at times due to how sick I are over having the personality disorder of BPD. All cause they dont understand my ME/CFS and that that can make some of us feel suicidal at times.

So now due to the BPD label, Ive been accused at times of attention seeking. Its sad that doctors incompendence and missing the right disagnoses or lack of medical understanding can lead to someone being given a wrong diagnoses which will greatly affect the care they get.

My doctor wrote these things that are factually wrong, and other is subjectively wrong. It all makes me look bad. I also find doctors notes are written in a way that aren't flattering to the patient. Is this just the way it is taught in med school? I know legal language can be like that, too - "allegedly", "claims".....

I have the Tanya "allegedly" claims written in my files too and I find it insulting that we go to medical people baring all and are then hit with crap like this. I wish they'd go and vertify the stuff I tell them about situations which have happened to me rather then make comments like that.

I hate that the words I use are then put in quotes in the notes.

I have stuff like that through my medical files and I hate the quotes too which are always done in a way to make me look bad and exaggerated out of context. Its like they choose to grab one single sentence out of everything I said and make a huge thing about it. Like you, I have a lot of trouble expressing myself and often struggle to even get my words right. The last thing I need to be concerned over is having accidental words used against me or something I said put out of the context it was in.

and what is worst is I need to be super careful not to cry at appointments as if I do, that is always taken out of context too and often another reason put onto why it happened then really why it occured. I had one dr (actually it was a psychriastrist that the hospital had me see one time I was feeling extremely depressed over my situation) that accused me of trying to get attention cause I started crying when talking to him. I still feel upset over this to this day and unfortuantely he still works at my local hospital.

It was so horrible, to be feeling so upset (I was actually feeling suidical) and then to be blamed for my crying he didnt believe I was really upset anyone except this sadist psych I think could of seen I was genuinely upset so I wont now ring an ambulance or allow someone to ring one if Im feeling suicidal as I could get this dr and end up being ill treated and just kicked out of hospital with no way home. I'd rather be left to die now then end up having to put up with abuse from that dr.

I so hate having drs see me when Im alone due to all this. Its bad enough trying to keep in mind what Ive made the appointment for and focusing on that then having all this other stress happening due to being worried about what drs are thinking etc.

anyway, very sorry to hear that you are experiencing this like so many of us do who havent got good drs for this illness.
 
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Jennifer J

Senior Member
Messages
1,010
Location
Southern California
@CFS_for_19_years, @SickOfSickness, @Braz, @Woolie, @daisybell, and @taniaaust1.

Thank you! I can't thank you all enough. Thank you for breaking it down for me and spelling things out (so helpful for me), for sharing your ideas and experiences, and for your empathy and humor, too.
... Another piece of advice is taking someone with you, preferrably male. So many doctors will believe the female patient more in that situation. It sucks, but so many of us have seen it happen.
I also believe this to be true. Anyone know where I can rent a dude for a day?
Fundraiser time for rent a dude for a day!:)


I'm so sorry you all deal with this too. The stories you've shared just break my heart for all that you've gone through and are going through. I'm appalled. I wish I was healthier to work and fight for changes and assist others more.

I also wish the computer could transcribe from my brain the reactions and replies I have to each of your posts as I read them. There's so much I'd like to acknowledge and respond to individually regarding what you have shared.

I'm very moved by everyone here for the help that you give, even more so because I know this illness and other medical conditions are affecting you too. I hope you all have better days. Thank you, everyone for your kindness and help. :hug:

Edit: Added pink highlighted quotes.
 
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TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
My PCP who barely knows me or my illness, wants me to sign a release so she can have my records from my Endocrinologist and my Dermatologist. This is a problem for me and I don't know what to do.

Any ideas? I don't want to make things worst for myself. Thank you!
Tell your PCP "no" and explain that you want your illness looked at with fresh eyes and not tainted with the opinions of previous doctors. Your doctor can't force you to sign a release if you don't want to.
 

Mouse girl

Senior Member
Messages
588
Can you just tell your new doctor that you can't get hold of your old doctors? It's pretty normal for some docs to stop practicing or to get rid of notes after 7 or 8 years I think.

Sounds like a better option is to try to network around and find a doc that other patients like yourself recommend. This is how i found docs that know what CFS is and what it isn't. Now, some docs were better than others. I found one recommended by a woman a met a support group and he was amazing. He sent me to other docs who are all so nice and understanding (most know about fibro rather than CFS but hey, close enough, lol). Now, I know that sadly, it can be soooooo hard to even hear about a doc who knows what CFS is and is willing to take CFS patients on, but keep on looking, asking...I really hope you can find a good primary doc who can then sent you on to other specialists. Now, I"m American, so we do have better docs in CFS/ME/fibro etc, not sure you live here. So I appologise if my advice is meaningless.
 
Messages
20
One of my doctors I decided I'm firing asked me to sign 3 releases AFTER he spoke with my doctors from
When I was living out of state for a while cause the docs where I live are terrible (including the one I'm firing). My LLMD here (an hour away) is fantastic.
 

Jennifer J

Senior Member
Messages
1,010
Location
Southern California
Tell your PCP "no" and explain that you want your illness looked at with fresh eyes and not tainted with the opinions of previous doctors. Your doctor can't force you to sign a release if you don't want to.

I like the thought of saying no. She's my primary care doctor, with me having Medicare/MediCal and the changes in how health care is regulated, I think she is mandated to oversee this to some extent. Not exactly sure, I've only glanced at what is expected of the PCP with the changes that took place here in the U.S. a few years ago.

Also, she's was referring me to see a Dermatologist and Endocrinologist so I think unfortunately this wouldn't be a I need a fresh set of eyes situation situation, even though some of what they wrote will most likely color how she sees me. I also think saying no would cause additional problems. Thank you, I do like the thought of saying no.:)
 
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