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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Very true! I have seen them make very significant errors, on forms for insurance, answering simple questions, and on disability applications,
as well as in the office visit notes, that are then, later, seen by other treating medical people!

Some of the wrong info, is done just by (careless) error, or by not listening, and some might be deliberate....who knows all of the reasons, but the inaccuracies can effect us, in a huge way!

Now, getting the blatant falsehoods or errors, even errors, corrected? That is yet an additional, exceedingly difficult challenge!
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I addressed this with my Dr. as her notes were so inaccurate and not portraying what I was telling her. The first thing I told her was to not write down that I was continuing to excercise! Where she got that I have no idea. After each appointment I would write on the back of the copy of the notes what I actually had said to her and how I really felt. I don't know if this would ever hold up if it became a problem with ssdi. She no longer writes on my notes that I exercise but her notes still never really explain what I have conveyed to her. Ughhhhhh
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
If you see errors in your doctors' notes, you can file an addendum which will be an addition to what is in the record. For legal reasons, doctor's notes can't be changed. For instance, if your doctor gets your gender wrong (!) you can file an addendum that says "Hey, you got my gender wrong" but the original doctor's note will remain as it was written.

I have no idea if addendums will be included when Social Security requests your records. If there is any doubt, it seems it would be a good idea to send addendums directly to them.

I've filed several addendums after visits with specialists. Doctors have an option to agree or disagree with what you say.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Sometimes a doctor's office visit record says that some symptom being addressed, is the "first time I (the patient) have brought it up" or "first time symptom is present" when that is extremely incorrect. And misleading, and definitely changes the reality.

I had forgotten about filing addendums, but I remember it now. Thanks for reminding on that, @CFS_for_19_years
Do we send it in writing to the doctor office, at the outset?
 

AlleyCat

Senior Member
Messages
105
I'm pretty sure my SSDI is going to be denied because my dr made vague notes. She just didn't write down all the things I told her about not being able to do things that I use to. I'm sure she didn't think it was important to say I can't take a shower every day or walk to the mail box anymore.

Lesson learned. Make sure your dr is taking good notes and correct ones.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
We could also be direct and insistent to our doctors and their offices,
that after we take a pre-written specific list, to our appointment, of what we cannot do and why, or the specific medical symptoms that are worst and prevent us from doing normal daily activities both at home and if we were trying to go to a job,
and tell them we insist that they have a nurse record every one of them/copy it, into our record.

So sorry if you get denied due to that, @AlleyCat
Something as clear and simple, as a person cannot work at any job location, without having showered, etc.
And if we do not have long enough stamina to prepare a simple lunch, we cannot last at a workplace.

The more specific we can insist they record things, the better our record will be.
And the doctors should realize that is part of their job. Some of us who do not get well, will need the 3rd party documentation, from them.

It is a stressful and exhausting job for us as sick people, to need to "supervise" things that the working professionals should be doing for us, without it.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Another way I’ve seen errors occur is by the doctor doing his notes voice to text—we all know how weird that can be.

Oh gosh, that would make some doozies of errors! :woot:

Reminds me of when i was recently trying to type something regarding "genealogy"
and spellchecker wanted to correct my misspelling with "gynecology! "
Oops! :lol:
:D
It is funny, EXCEPT when it is in our medical records! :aghhh:
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Oh gosh, that would make some doozies of errors! :woot:

Reminds me of when i was recently trying to type something regarding "genealogy"
and spellchecker wanted to correct my misspelling with "gynecology! "
Oops! :lol:
:D
It is funny, EXCEPT when it is in our medical records! :aghhh:
I actually found in a doctor’s notes that I had had an “amygdalectomy”! Now that would explain some of my symptoms :confused:. I’m sure it was a voice to text screw-up.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Are you very 100% certain that you didn't have one and then , not remember it, @Sushi ? ;)
:woot::jaw-drop:o_O:confused::confused::confused:

Nevermind. I was kidding! :D:lol::rofl:

But the medical professionals should have noticed by now, tht voice to text is NOT meant for such important info as medical records! :aghhh::(:(:(
 

Likaloha

Senior Member
Messages
343
Location
Midwest usa
Since my pcp and others have electronic records I find that when I check my MyChart there are significant errors in the list of medications that I do take and what is in their electronic file... Every time I go to him we go over my meds and when I get home and check it is wrong... Lucky for me my rheumatologist/pain doctor is old fashioned and he does only paper files... while this means my files are 3 or 4 huge files thick, he can see what he has prescribed or written and there is no problem