Met her new Neuro P.A.

AlekoW · July 17

Kind of a vent/externalize the experience's effect on my insides so I don't crash—

—I'm cooling off a little more today after yesterday's appt with DW's (61) new (mediCAL health plan) neuro. Upside: We got the referral to UCLA (or the submission to the health plan for it)—that's a big deal for us so I'm holding onto that with everything I got. And, I smiled & nodded, kept my cool in the office—I kept my default 'protective in the face of bewildering opposition,' "mountain in me," in check throughout.

Downside: "You've got yourselves all worked up," "I don't see this as Alzheimers, not even MCI," "I don't know who this Neurologist is with this long chart that tells me nothing," "I looked at the MRIs & PetScan, shows me nothing out of the ordinary; you're perfectly healthy," "Neuropsych testing always shows deficits, it doesn't mean anything," "everyone has plaque, this is just normal aging," "this is primarily psychological and my colleagues agree," "I would never give this diagnosis until I see a patient who can't dress, bath, or take care of basic needs," "Anyone can have the gene, that doesn't mean it's active," etc. At the end: "I'll put in a referral for you for UCLA if only for your peace-of-mind."

The neuro did all the usual, "draw a clock with numbers," "draw a box," "identify the animal," "count backward by 7s," the usual Q&A: "touch your nose," "walk to the corner, walk back hands out," all that stuff. The neuro P.A. reported on the clinical summary she walked fine—never mind she clearly stumbled and lost her balance in the middle and the end of the "walk." She reported she counted backwards "correctly"—in spite of the fact a 38 year career HS math teacher made three errors in the backward counting and got flustered after the first calculation. The P.A. didn't read the neuropsych testing results ("they're not important; these psych people have an interest in finding deficits"). She doesn't think it's Alz until stage 4 symptoms? Cool (/s).
At least DW's new PCP, whom we saw two days before, knew her (previous) Dx'ing neurologist well, "We may be in the country out here, but he's one of the best."

Super fun. (/s) We left the clinic pretty shaken but relieved we got a commitment to a referral, which we've wanted since Dx and no treatment for the last six months. DW was crying this morning over the appt and "why doesn't anyone listen to us." I reassured her we're going to UCLA and there's a doctor there we can count on. IF the P.A. yesterday is right, we'll know for sure because UCLA will find out. An hour later after breakfast, "Did I have doctor appts this week?" and "The World Cup has a final? Why does it have a final?" (this from a soccer fan who follows several teams and used to know all the players by jersey numbers & their distinctive "hair.") and "How come there are puzzle books on my table?" So yeah, no dementia or Alz (/s).

*head desk* [I'm going to go to a therapist—this sort of encounter is getting the better of me]

Ed's mom · July 17

They called today with the referral I've been waiting for….next Thursday! Been waiting months, hope we have a better answer than you receive. This is our referral.

Quilting brings calm · July 18

That PA needs some education.,, the symptoms she described in order to diagnose? Well into stage 5. Prevailing theory is a PCP can tell at stage 4 while family often recognizes at stage 3 ( MCI).

Michele P · July 18

https://alzconnected.org/discussion/76585/met-her-new-neuro-p-a

I can’t even imagine how upsetting this appointment was for you and your wife. This woman should not be allowed to treat patients. She clearly doesn’t know what she is doing and doesn’t understand the disease! I hope you have a better experience at UCLA. Don’t give up. You know what is going on with your wife. I’m sorry you are both going through this.

annie51 · July 18

I am so sorry you’re going through this. It’s almost unbelievable what that PA said! As @Michele P said, don’t give up. I hope you get what you need. So many of us know in our hearts what’s going on long before other people do.

jgreen · July 18

You are one strong advocate, @AlekoW! Hang in there!

I did a self-referral to Mayo Clinic. It was a 5-month wait, but so worth it! Lots of phone calls and persistence on my part. I hope you have similar luck at UCLA. Keep us posted.

Michele P · July 18

https://alzconnected.org/discussion/comment/277665#Comment_277665

Did you get a referral for The Habit Program at Mayo? It is exceptional for the patient and caregiver.

c.richardville · July 18

sorry this happened to you. Our PCP told my husband he didn’t have Alzheimer’s after our neuro diagnosed it which he did with a spinal tap in his office. I think they can diagnose with a blood test now. You need a confirmed diagnosis advocate for it. You are and will be in anticipatory grief. Learn what as much as you can about it and how to deal with it. Good Luck

beachwalker5 · July 18

There is no excuse for the behavior of that PA and I'm so sorry that you and your DW had to go through that.

I hope you have a better experience with your UCLA referral than we had in getting my DW in for an initial neuro consult with their local group in our suburb of LA. Initial appointment was a 7 mo wait, they canceled her at month 6 (the doc walked out of his UCLA Health job without notice), then they rescheduled her with an osteopathic doc another six months further out (!!!!). An "osteopathic doc"????? What would be the point?????.

We switched into plan B and I was able to get an appointment for her with an experienced local neuro doc five minutes from our home with a 3 week wait (we got very lucky, I think they had a cancellation ). The doc spent two hours with my DW. I thought he was excellent . My anosognostic DW hated him (she would/ will hate any MD that examines her "perfectly healthy brain"). Thankfully my DW is finally getting scanned and blood tested to get to the bottom of her quickly progressing memory loss/ cognitive decline/ ever delusional behaviors.

I truely hope you get the help you need at UCLA, hopefully our experience was just an anomaly. Best of luck to you.

brupt30 · July 18

Trust your own instincts - my DH's long time PCP laughed off my concerns early on, even after he failed the "mini-mental" exam. Original neurologist also minimized his symptoms and made me question my own judgement. It took a while to find the right team where we felt supported.

We were not accepted into the Habit program since the team at Mayo said that he is further into dementia and would not benefit from the program that is more tailored toward those with mild cognitive impairment (he is stage 3-4 and very highly functioning with ADLs but extremely poor short term memory). That was a disappointment, but I've been learning more about the Medicare GUIDE program. They don't accept Medicare Advantage so we don't qualify, but I've learned that an equivalent program is offered by our local health network called the "Aging Brain Care Program". Starting with them next week and it sounds like great support services for caregivers.

jgreen · July 18

https://alzconnected.org/discussion/comment/277667#Comment_277667

Thanks, @Michele P - No referral. DH too far along for that. We did have a counseling session with an educator who stressed lifestyle changes - mainly for me, the caregiver. Diet, exercise, socialization, etc.

DH absolutely loved the neurologist! Every once in a while he asks if we are going back to Mayo. It made a lasting impression on him. I highly recommend any type of university related or research facility if reasonably close. Those professionals really know their stuff.

Timmyd · July 19

A slow and difficult diagnostic process seems to be a common experience. I was able to convince DW to see her PCP about memory issues. She failed the in office MOCA test badly and got a referral to neurologist. From that first PCP visit until diagnosis of EO ALZ was about 12 months and involved multiple appointments with multiple "specialists". We live in a large city with many highly regarded medical facilities.

Years later, aside from the aggravation, I am not sure it really mattered. There is no disease altering treatment (at least at the time of our diagnosis). A quicker diagnosis would have been more convenient, but would not have changed at all the path that we are on.

EarlInCA · July 19

We've had excellent care from UCI Health neurology including 17 of 18 Kisunla infusions … DW was among first when they got the Kisunla program established. Neurologist was top notch. We established a plan and he turned care over to PA who has been excellent. Hope you get the same at UCLA.

WIGO23 · July 21

Our experience with healthcare providers……

My DH’s first diagnosis was normal pressure hydrocephaly given by a “top neurologist” in our big city, hometown. Even I knew he did not have the essential triad of symptoms for that diagnosis to be accurate. We moved on. Second “leading neurologist” said literally he did not want my husband as a patient because we asked too many questions.

It took us six months to get the first available appointment at Mass General Neurology Department in Boston (had to travel 1400 miles from home). After three months of brain MRI’s, lumbar fluid test, neuro-psychology examinations, bloodwork, we finally had a reliable diagnosis. The whole process took nearly 18 months. Let’s face it, folks, our Healthcare system is broken in our country. If we had not had the resources to travel for quality diagnosis and care, who knows where we’d be? Maybe the first “top guy” would have wanted to do a surgical intervention for an unnecessary shunt!!!

But please don’t even get me started on the lack of any helpful care since diagnosis! I find real help in the experiences shared here!

Met her new Neuro P.A.

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