Changing Neurologists

Kellybelle

We are seeing a new neurologist tomorrow and I'm very nervous. My husband was diagnosed a year ago at age 65. The neurologist was saw wasn't very helpful. Just said take Aricept. We received a letter that the doctor went into research and we needed to find another. Any suggestions on what questions I should ask? The previous neurologist said staging didn't matter, does it?

AlekoW

Stages tell you where you are, can imply treatment paths. Did the previous do any labs, imaging, testing?

I think in the resource tab there’s a DBAT blank form you can kind of fill in & bring it with you to help describe symptoms. Also in the tab or on the Alz Assoc site there’s is a section in how to talk to your neurologist that might be helpful.

Somewhere on here there’s my nightmare description of the Neurologist we had to see to get our referral to UCLA—as a means of solidarity with you. Here’s hoping your new one is phenomenal. 😀

Kellybelle

https://alzconnected.org/discussion/comment/282707#Comment_282707

Thank you so much! I will look for the how to talk to a neurologist. I appreciate the reference.

The old Dr did a PET scan and a blood test and said it showed Alzheimer's proteins. Really trying to understand this all

sandwichone123

Some people have found their neurologists to be helpful, but some of us have found that, past the initial diagnosis they're of limited usefulness. They don't usually understand symptom management, and there isn't any cure for most dementias.

The neurologist we went to seemed upset at my dh for having a non-curable condition, as if it were a personal attack. I recognize it may be dispiriting to a physician, who wants to cure stuff, when people have non-curable conditions. Still, he gave us a diagnosis and we were able to file for disability, which is what I needed.

Quilting brings calm

Mom’s neurologist put her on Donepezil. Then saw her every six months for a couple years. Referred her to a psychiatric resident’s clinic. Which prescribed anti anxiety and depression medication. All the neurologist did each time was watch mom walk and ask a few questions. All the clinic did was let mom ramble for a few minutes each visit and refill the prescriptions.Eventually we cancelled both the neurologist and the clinic in favor of the PCP prescribing the same medications. Too many doctors frustrated my mom.

Dirigo

We had a kind neurologist. Who left. The new one was nice enough, but basically said that most care could be handled through our PCP. (My DH is on donepezil and menantine, both of which have helped.) It felt a little insulting (the doc did not have a way with words), but he was essentially right. The neurologist is there if an issue with medication arises, but otherwise our kind and long-term PCP is there for basic issues of care. I just canceled the 6 month neuro appointment and scheduled ahead 6 months (if needed). There is a shortage of neurologists in many places, including midcoast Maine, where we live. Long waiting lists. People who live in urban areas or near university teaching hospitals have many more choices. I see lots of advice here for geriatric psychiatrists, also. Where we live—not available. So where you live has a lot to do with the availability of medical specialists.

AlekoW

https://alzconnected.org/discussion/comment/282712#Comment_282712

same: the gene/allele, MRIBrains (literally 4 of them) PetAmyloid, neuropsych. Insurance hell disrupted every step.

Things got labor intensive for me today but I hope you found the links for the DBAT & how to talk to your neuro resources . I meant to get back & post the links. Best laid plans…