Changing Neurologists

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. 😀

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.

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.