Neurologist lost all his records! Any advice?
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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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!!
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?
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?
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.
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.
I bet that felt really good when she said that she doesn’t forget her patients. Phew! 😎