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While doing a shift from one computer system to a new one, all of my husband's records with his neurologist were lost. They didn't even have him listed as her patient. But his anti-seizure meds have been getting regularly refilled all this time by her. Her office acted like I was signing the refills -- it got weird for a bit.



Any way, dh sees the neurologist as a "new" patient this week and I have to say I'm a bit uneasy. What if she "overturns" the previous dementia diagnoses that were made by other doctors? Those other doctors told my daughter and I that he has dementia but they never told him and his neurologist never addressed it at all. I eventually told him last year when a cardiologist pushed for some heart procedures that would require sedation several times.

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Ask what backup system the neurologist used.   Unless she/he's a real novice, he should have backup, possibly offsite, or in the so-called "cloud."

Another option is his/her interface with hospitals with which he/she is affiliated.   I was told some years ago by one of our doctors that they're connected with hospitals with which they're affiliated, and can access the hospital records, and that their own records are available through the hospital.   The hospital should have a more secure backup system that could help restore the records.

Who managed the switch?   Was it the doctor's office or a computer service, or some other entity?
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graygrammie Jun 2022
All I know is the entire WellSpan Health System switched to a new system and the whole process wasn't without glitches.
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GG, what is your concern if the neuro doesn't agree with the dementia dx?

The definitive dx of dementia (other than autopsy) is papercand pencil neuropsych testing, although I'm told that there are sophisticated PET scans that can be used to diagnose some forms.

If the neurologist tells your DH he doesn't have dementia, what is YOUR plan?
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graygrammie Jun 2022
Well, honestly, I had plans in place to leave him the following January, and this hospitalization and diagnoses came the week before Christmas. I decided that the dementia diagnoses explained his behavior toward me and could not be considered willfull acts on his part. As I put it to someone else, his abusive behavior (never physical) was due to sickness, not sin. So I stayed. What will I do if she doesn't come back with dementia? Well, I guess regret my choice to not follow through. But I won't leave now as his pcp gave him less than two years to live a year ago due to heart failure.
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Sorry, Charlie, to the first neurologist. There are laws about medical records. You can't just "lose" them and not get spanked on the butt for it. This jerk of a doctor and her office need to be reported. It may be too late, but good God, I'd get a new neurologist whose office is run like it's not yabba dabba doo time.
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graygrammie Jun 2022
This was his first neurologist beside the one in the hospital.
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What sort of a doctor's office has no back up system for their patient's records????????

I would check with his cardiologist to see if there are any records THERE about this diagnosis by 'other doctors.' And also at the offices of these 'other doctors' you mention, b/c I'm sure they DO have intact records about your husband and his medical history.

If DH is going to truly be seen as a 'new' patient by this neurologist, and since there were never any records or tests (?) documenting his dementia diagnosis to begin with, I think he'll have to start over from square one! Meaning new cognizance testing will have to be done in order to determine if he has ALZ/dementia to begin with, and at what stage he's at NOW, so a baseline can be determined. Were there any MRIs or CT scans done by any of these doctors in order to help determine the dementia dx? Any cognizance testing?

I hope one of the other doctors can rustle up some records so there's some sort of baseline to go off of for the neurologist! In any event, it's a good idea to get some testing done on DH in the form of MoCA and/or SLUMS tests so you know where he falls on the scoring system. My mother first tested out at an 18 on the MoCA score and eventually she went down to a 10 (scores are based from 1-30). They stopped testing her in the final 2 years of her life. Her brain MRIs were all clear, so no ALZ was diagnosed, just 'progressive dementia' based on the MoCA test scores. That turned out to be true, too. Never did find out if it was vascular in nature or what, though. Her one visit to the neurologist revealed that it was not Parkinson's she was dealing with, but nothing more.

Good luck with all of this!!
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JoAnn29 Jun 2022
My first thought too. Why wasn't the system backed up before files were transferred.
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The pharmacy should have records of the prescription history.
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graygrammie Jun 2022
Oh, her office has been faithfully refilling his three prescriptions with her for over two years. Which is strange and probably against the rules, at least as far as insurance goes. He literally slipped through the cracks.
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Dh saw the doctor. She (a young woman) REMEMBERED everything about him. It was a remarkable appointment, my worries were for naught.

She updated all his records, confirmed again the MCI diagnosis, also saw some other things that I could tell she was concerned about but apparently didn't feel ready to address. She asked if he was still seeing the oncologist she referred him to because in her blood work she picked up MGUS which can be a predecesor to the cancer his brother had. She also asked how his brother was (he died in March 2020) but see, she remembered those kinds of details. Her words, "I never forget my patients."

She did not address the FTD, but she never has. But I do have record of that from the hospitalizaiton in 2017. And the two MRIs were in the WellSpan records, just not directly in hers, and she was able to access them and bring them into her files.

So overall, a good appointment.
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I’m glad the appt. went well, Gray! 😉

I bet that felt really good when she said that she doesn’t forget her patients. Phew! 😎
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Did you have no letter, no copies of diagnosis that you yourself kept in your own files?
No one can "overturn" diagnoses made by OTHER doctors. You say the neurologist never saw or address this at all? So how in the world could this neurologist then lose the records he or she never had before, or change a diagnosis he or she never made before.
Color me confused.
You have the diagnoses of the other doctors. Take them with you. Then await the "new patient" testing of this neurologist and on you go.
What is your concern if there IS indeed a diagnosis of less severe disease than you previously had??? Would that not be all around a GOOD thing? Are there changes you have noticed that are changes for the better? I really am not understanding the concern here.
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