Having NO LUCK getting mom an appt with a Neurologist

KellyB2006

I am in South Carolina, just south of Charlotte, so not in a rural area or anything like that. I have been attempting to get my mom AN APPOINTMENT with a neurologist for OVER A YEAR, I've had her primary care doctor send in referrals to every neurologist in a 20 mile radius and I've called them myself, only to leave voice mails that are NEVER returned. Is this normal? I can't even get a person on the phone. Mom's mother (my Nana) had Alzheimer's. I am at the end of my rope with this. I don't know what to do. My mom has a psychiatrist for anxiety/depression who started her on Aricept, she's on the 2nd or 3rd week, but shouldn't she be seeing a neurologist at this point? I live with my parents and my Dad is not handling this well and I'd really like to know IF this is likely Alzheimer's or what is going on with her. She is 77 and otherwise her health is stable. I'd appreciate any suggestions or advice if anyone has anything. Tomorrow I am going to try to call some places in NC to see if I have any luck. Thanks

psg712

Can your PCP's office help by calling the office to which they have sent the referral? Unfortunately it is not unusual to wait many months for a neurology consultation, and it will be longer if you self refer.

A PCP can make a diagnosis too. In your mom's case, it seems that the psychiatrist has already done so, if he has prescribed Aricept. Maybe talk to the psychiatrist about next steps.

housefinch

Is there a neuropsychologist who can do the cognitive testing in the meantime?

Quilting brings calm

my Mom’s neurology NP wasn’t really all that necessary. She gave mom the 10 minute MMSE tests every six months. Started her on donepizel and mirtrazipine. Watched her walk. That’s about it. I cancelled mom’s appointment this summer and asked the PCP to take over her donepizel, her mirtrazipine and sertraline, the last was prescribed by residents at the local teaching hospital ditch clinic. She never saw the same resudent more than 3 times in a year. Never any continuity of care.

Quite honestly the PCP and the psychiatrist can handle it

--Rebecca--

Get a copy of the referral, go to the neurologist's office and get an appointment in person. Ask to be put on the list for fill ins for cancelations.

H1235

Welcome. Aside from ruling out other treatable reasons for her symptoms there is probably not much need. I would assume her PCP has done that. Mom did a few follow up appointments with the neurologist. At one of the appointments I asked about the reason for the follow up and they said additional appointments weren’t really necessary but some people like to check in. So the appointment might not be as important as it feels like it should be. I can understand how a Definitive diagnosis might feel like it settles things a bit. Could you talk with the PCP or her psychiatrist for an opinion on how important this neurological appointment is. Healthcare in the US is a mess. Good luck.

harshedbuzz

@KellyB2006

Hi and welcome. I am sorry you find yourself in this place but pleased you found it.

You and I are in similar boats. It is frustrating. It can be difficult to be seen for a dementia evaluation. Not all neurologists see patients with dementia as part of their practice focusing on other conditions like epilepsy, MS, migraine, spinal issues, etc. Our referral list included people who didn't treat dementia; this might be at the root of your lack of callbacks. Sometimes you can suss this out be looking at the practice website.

There aren't enough practices that do to meet the demand. And with the approval of new infusion medications like Leqembi the waits have gotten longer as people formerly diagnosed by PCP are now trying to get into these practices to gain access to the new medications. I got a referral for mom to be seen by the memory center where dad was back in May. I'm still waiting for a call to schedule an appointment 6 months from that date. I'm still on the list, it's just not my turn.

FTR, I am in suburban Philadelphia, a city with 4 allopathic medical schools, and that's the wait. You may find it prudent to expand your search. If it's doable, I'd look to medical school affiliated practices as they tend to be larger IME. In the meantime, did the PCP do the basic testing to rule out other conditions that have similar symptoms? Mom's PCP ordered blood work, a quick MMSE, and imaging. The bloodwork picked up Lyme Disease which can lead to cognitive issues and that was treated. Her focus and memory did improve somewhat, but given her word-finding issues, executive function glitches and personality shift I'm still moving forward.

I'm trying to be calm about this. I have the legal paperwork and eyes on mom almost daily, so I feel I can prevent the kind of hair-on-fire situation that drove dad's diagnosis. I also feel, in my situation, time will add clarity to something I really, really, really don't want to deal with. At mom's age and given that she's a woman, I would not encourage the use of the new drugs. They don't seem to work well in women or the elderly and only offer a delay of progression of about 8 months.

TL;DR I would confirm that the referrals are to dementia specialists. I would expand my search beyond a 20 radius. And I would confirm the basic testing was done for hormone and vitamin deficiencies and imaging to rule out stroke or a lesion of some kind. Good luck.

HB

Anonymousjpl123

Definitely agree regarding expanding your search radius. Also, have you tried any memory centers at hospitals? I feel your pain as the neurologist my mom saw quickly was absolutely useless. Worse than useless. That said, I wound up making an appointment 7 months in advance (yes) that I did keep and it was worth it as this neurologist was an absolute expert.

I would also seek out geriatric psychiatrists, see if there are any in your area, or even just general geriatric general practitioners with experience in dementia.

I have no idea if this hospital is any good, but this is the kind of clinic I am thinking of:

https://muschealth.org/medical-services/neurosciences/memory-disorders

I hope this helps. I know it’s frustrating hang in there.