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Neurologist says No Need to Return
Posted: Friday, July 12, 2019 6:33 PM
Joined: 1/26/2015
Posts: 184

So, visiting the Neuro this week, she asked if we would like to come back in a year or just use our PCP, so in other words, "there's no need to return".  OK, thanks.  I get it.  We had an MRI last Fall that showed moderate, bordering on severe Alz for my DH.  No doctor really checks him anyway; only some vitals are taken.  It's as though we were sent home to wait for the end.

Not that I don't know this will happen - when, who knows, but his early onset seems to be working fast.  Tonight he's telling me his Solitaire game isn't working anymore.  What isn't working is his brain telling him how to play.  He tried to explain what he thinks should happen but had a hard time.  I showed him how the game is to be played but he seemed adamant and reluctant to believe me.

So, I let it go.  I'm trying to let it all go.  But the feeling of "there's no need to return" was a bit overwhelming.  Honestly!

Posted: Friday, July 12, 2019 7:05 PM
Joined: 6/21/2019
Posts: 521

I'm really shocked a neurologist would say that to you. He should've left it coming back in a year, or SOONER if your husband showed a sudden severe decline.

He's the one who's supposed to monitor your DH's condition to refer him to Hospice when it's time. 

IMO, your DH needs a new neurologist.


Michael Ellenbogen
Posted: Friday, July 12, 2019 7:44 PM
Joined: 11/30/2011
Posts: 2754

I agree and most are idiots.
Posted: Friday, July 12, 2019 7:48 PM
Joined: 2/16/2018
Posts: 161

Riajean, my DH's neurologist is wonderful, spends lots of time with us, talking, small talk, friendly advice, but the only 'testing' is the MMSE (I can predict his score there myself), and some simple neurological tests (follow my finger type stuff).  Maybe he's too nice to suggest we not come back anymore; but, I wonder why we do....... every 6 months.  I asked for another MRI but was told it wasn't indicated because DH's decline is gradual / no step function changes.

I suppose it might be good to have him if and when we start experiencing any behavioral problems that might require medications.

I wish you well as you face the challenges ahead.

Posted: Friday, July 12, 2019 7:55 PM
Joined: 12/4/2011
Posts: 17830

You may very well need your neuro in the future.....your PCP may not have the experience to handle dementia.
Posted: Friday, July 12, 2019 9:16 PM
Joined: 2/2/2014
Posts: 4982

DW has not seen a neurologist since 2014.  Meds have been handled for the last 18 months by a geriatric psychiatrist.

There is NOTHING a neurologist can do for her.



Posted: Friday, July 12, 2019 9:46 PM
Joined: 1/26/2015
Posts: 184

Thanks everyone.  My DH went from a score of 20 to 3 in 4 short years on that MMSE or whatever that test is called.  Maybe she saw something in that like what's the use?   She couldn't see anymore testing would serve a purpose.  He's only 66.  Early onset so it scares me how fast he declined.  Don't know how to feel but do understand this is fatal.   All I can do is watch and wait.
Posted: Friday, July 12, 2019 10:01 PM
Joined: 6/20/2016
Posts: 2109

There's not a thing the neurologist can do for him.  If his MMSE is 3, he is profoundly demented and there is no medication that will help him.  If necessary, a geriatric psychiatrist can be used for behaviors.  A neurologist is totally unnecessary in this case.
Posted: Friday, July 12, 2019 10:52 PM
Joined: 12/21/2018
Posts: 337

Our last visit to the Neurologist was February 2019. That was when my DH received the early onset dx (at age 55). 

The neurologist referred us to social workers at the medical school. I recall a significant feeling of unease when I asked the social worker "when should we go back to the neurologist?" I don't remember his exact words, but it was something akin to, you won't be seeing the neurologist anymore. I felt like we had been kicked to the curb. 

I don't know what the neurologist could do for us going forward. My husband doesn't like going to the doctor, so I guess its a win. I'll save the $40 co-pay and the $4 for parking and have one less place to go. 

My husband is under the care of a geriatric psychiatrist. She now prescribes DH's meds.  She has been fantastic with DH. He trusts her which is rare for him.  We still have a PCP, but the geri-psychiatrist will be our go to for dementia and behavioral issues.

Posted: Saturday, July 13, 2019 2:30 AM
Joined: 8/22/2017
Posts: 386

Nowadays wrote:
In the meantime the drug the hospital prescribed has eliminated his fear and anxiety that had resulted in headaches, stomach aches, and higher blood pressure. His pain was real, but was driven by fear of his story that his headaches and stomach aches were untreated. 
Hello Nowadays -- can you say what drug from the hospital dealt with his fear & anxiety?

We live in Seattle and have not been able to get a referral to a geriatric psychiatrist because my husband is still 'cooperative' and 'not hostile.'  However, he displays exaggerated depressive behaviors for hours at a time, with intense questioning at least 4 or 5 times a day, mostly due to his inability to remember that his parents are in fact dead (several years ago).  His mood is pretty good in the morning, but by late afternoon he wants to call them and I have to recite their deaths, their good long lives (died at 91 and 92), their good deaths etc multiple times.

I have asked his PCP about a referral, but he  seems wary -- I have the feeling that he doesn't trust the now merged clinics in Seattle -- he told us earlier he preferred one set of MDs in this field over the other (there were two distinct practice groups) but told me to wait until my husband became more problematic (not an exact quote).  Then the two practices merged and he has basically said nothing much, except I get the idea that he is hesitant about making a referral.  No doubt my husband is the nicest stage 5 ALZ patient he has dealt with of late.   
This PCP  told me last year that I was 'very lucky,' referring to my husband's general behavior -- very up beat at appointments (likes the likeable doctor, it's a kind of social call). As far as asking about his dead parents five times a day (down from abut 8 or 10 a few months ago), worrying about neighbors and people walking by on the street, well that's for me to deal with.  Of course the 'very lucky' comment sticks in my craw. I do realize that compared to others in my situation he has a point,  but it wasn't the best thing to say to an exhausted ALZ spouse.  
I understand that my complaint here doesn't mean much compared to what many of you are dealing with -- just another long irritating day.

Posted: Saturday, July 13, 2019 6:05 AM
Joined: 8/29/2017
Posts: 66

My wife went to a neurologist/psychiatrist last fall because her delusions were getting worse and pcp didn't want to prescribe psychiatric drugs. She was started on seroquel 25mg twice/day and it helped the delusions. A few weeks  ago the delusions were back and worse than before. I was not her husband, I killed her husband, her parents just died, she wants to go home, etc. 

She started 50mg twice/day last week and it seems to be helping a little.  She still has flights of fancy but doesn't seem quite as anxious or upset.  Joe

Katy sue
Posted: Saturday, July 13, 2019 6:39 AM
Joined: 9/24/2016
Posts: 372

Riajean, I know how you feel. It’s just like a feeling of hopelessness suddenly invades your space. We had a different experience than most , from what I read, with our neurologist. He was a very kind and compassionate man. We saw him about every 6 weeks and he monitored very closely with changes. In addition, he listened intently as I verbalized all my concerns in private mini sessions with him before my DH actually came into the room. He also was an amazing help when filing for SSDI. I always felt he fully understood the emotional and physical impact of EOAD. When my husbands behaviors took a spiraling turn for the worse, the neurologist said I needed to make an appt ASAP for a gerripsych dr, as he did not prescribe the types of drugs DH would need. So it was at that point that I felt the sudden fear that we were in unknown territory, even though I knew how it would all end. I  could read the sadness on the neurologist’s face.

So really, the neurologist ( a good one) can be a very important player in the grand scheme of things. Depending on the timeline of disease ( we are EOAD ), there comes a time when the need for this dr is exhausted.  So I might advise anyone to have the next specialist, such as a few gerripsychs  lined up and appts made as soon as the first need appears in your LO, as these guys are hard to find and schedule in a timely matter. Best wishes to you, Riajean.

Posted: Saturday, July 13, 2019 7:36 AM
Joined: 2/2/2014
Posts: 4982

DW takes SEROQUEL quetiapine fumarate.  25mg per day

This is not a trivial drug but it helps with her psychosis.  You have to watch for PISA syndrome.  (leaning over like the leaning tower of Pisa)



Posted: Saturday, July 13, 2019 7:43 AM
Joined: 2/2/2014
Posts: 4982

McCott wrote:
Nowadays wrote:

This PCP  told me last year that I was 'very lucky,' referring to my husband's general behavior -- very up beat at appointments (likes the likeable doctor, it's a kind of social call). As far as asking about his dead parents five times a day (down from abut 8 or 10 a few months ago), worrying about neighbors and people walking by on the street, well that's for me to deal with.  Of course the 'very lucky' comment sticks in my craw. I do realize that compared to others in my situation he has a point,  but it wasn't the best thing to say to an exhausted ALZ spouse.  

You have my total sympathy.  DWs lovely Dr was upbeat to her,  but then she would look me straight in the eye and  say "are you hanging in there ok?  Make sure you take care of yourself"   I know it helped me.  

So Ill say it to you  Hang in there and take care of yourself as best you can 


Posted: Saturday, July 13, 2019 9:16 AM
Joined: 4/12/2019
Posts: 142

On the topic of neurologists:  I have profound peripheral neuropathy, which was diagnosed by a neurologist, one of the best doctors I have ever met.  (and I've met too many to count).  The nerves in my legs are completely non responsive, and I walk with braces and a walker.  This started about 9 years ago, at age 67. I had skied, biked, hiked, danced, etc. all my life.  That is over now.

After about a year of trying to find the cause of my neuropathy, it was apparent that the cause cannot be found, nor treated.

At that point the neurologist asked me to see his Physician's Assistant in the future, for renewal of my prescription (Gabapentin) for nerve pain.

He could not DO anything for me, and I understood that long before he did.

Neurologists use their vast knowledge, conduct tests and make diagnoses.  They do not manage conditions that have no further testing or diagnoses.  

This May, however, I developed a tremor in my left hand.  I called, made an appointment and saw this marvelous doctor once again.  He suspected that I was oversaturated with Gabapentin, ran a blood test and found that was true, and told me to cut my dosage by 25%.

He also tested my iron levels, and found them to be extraordinarily high.  I have been anemic for 12 years and took iron twice day to combat it.  However, something had changed!

So I discontinued the iron, of course.

The tremor is much better!  I don't miss the extra Gabapentin (which I take for nerve damage in all of my skin, which, untreated, feels like my skin is on fire).

My PCP tested my iron levels again last week, and they are still sky high, so she will follow up with more tests.  She will send me to a hematologist if the levels stay sky high.

When I saw my neurologist in May, I 'apologized' that the appointment was with him, rather than his PA.  He told me my visit required the level of his training to consider all possibilities for my tremor, and that he was the right person to evaluate this.

I have 'fired' doctors, sometimes to their face, I have had doctors 'fire' me when they were at the end of their level of expertise and further appointments would not be productive.  

It's no fun running the medical gauntlet.  I just came back from a two-week vacation with pneumonia and a partially collapsed lung. A visit to Urgent Care and a referral to the ER were required.

 Now I have a new doctor, a pneumologist, whom I will see for the first time in August.  I doubt if she can 'do' anything, but I want baseline testing, consideration of treatment (if any) and someone to 'follow up' as needed.

The worst thing to hear is 'I've done all I can', now you will have to 'live with' whatever it is, or die with it.

Regards, ElaineD



Posted: Saturday, July 13, 2019 10:08 AM
Joined: 7/12/2017
Posts: 1391

When we went to the "brain clinic" for my mom for all the tests etc, I thought yeah great!  If they can't help mom at least I have some answers we maybe they can use her tests, diagnosis, later visit to help with research...hahahah yeah like that is going to happen

Who are they researching when they do this research for a cure or whatever?  I know there is no solid diagnosis or slide or symptoms, etc, but there are patterns, and I would think this would be helpful to see how the tests predict future decline of abilites etc, but guess I was too hopeful for reserach like that

Rescue mom
Posted: Saturday, July 13, 2019 10:52 AM
Joined: 10/12/2018
Posts: 1340

McCott see below. And, Much  like gubblebum, I thought the neurologists and tests would tell me all kinds of things or help in dealing with the AD diagnosis. I had a pretty dramatic, emotional wake-up call on *that*.  The receptionist did hand me a booklet of tips as we left (sarcasm icon needed here).

This board has been a thousand times more helpful than the neurologists etc. although I realize as things progress more medical/drug help may be needed.

McCott, unsure about your state regs etc, but in my area big groups under different names “own” almost all doctors groups, and getting one to refer outside their business group  is virtually impossible. You’d think they’d send you to best needed, but those days are gone. 

Also, in many cases, the docs Medicare (which you may not be in yet) insurance reimbursements (and pay) depend on keeping costs down, and referrals “managed.” Many of our docs were required to notify patients of their limits on referrals, but the language was so cloaked in “providing efficient care” it wasn’t easy to get the bottom line. And that’s what it was all about—the docs bottom line. There’s an official term, or acronym something like MACRO or MIPS, for this new medical business model, but it escapes me at the moment. It’s not so new, though, just bringing back something that was more common 15-20 years ago under a different name. The less health care cost  the doc causes, the more money the docs get back—all in the name of efficiency.

Posted: Saturday, July 13, 2019 12:56 PM
Joined: 1/26/2015
Posts: 184

Thank you, Katy Sue.

.......onward, I guess.

Posted: Saturday, July 13, 2019 5:25 PM
Joined: 8/8/2014
Posts: 861

My husband’s neurologist would not prescribe any medications for behavioral issues with his Alzheimer’s. By this point in his illness. I did not see the need for a neurologist any more. Husband’s pcp handled medicines for the next six months, and then my husband moved into a skilled nursing facility, where geriatric psychology handles his medicines.
Posted: Saturday, July 13, 2019 6:26 PM
Joined: 7/6/2014
Posts: 658

Gubblebumm asked:

Who are they researching when they do this research for a cure or whatever?  I know there is no solid diagnosis or slide or symptoms, etc, but there are patterns, and I would think this would be helpful to see how the tests predict future decline of abilites etc, but guess I was too hopeful for reserach like that.

My husband was part of a research program at Northwestern in Chicago. Please see the link below for other centers.
Posted: Monday, July 15, 2019 11:05 AM
Joined: 12/17/2017
Posts: 33


My DW never saw a neurologist beyond the pre-diagnostic stage when she was evaluated at a geriatric medical clinic. They said that the neurologist isn't going to be able to help with the behavioral issues that arise. 

The best combination for us is the Alzheimer Disease Research Center (Caring4Two posted the NIH link to centers nationwide). They made the diagnosis of early onset AD and do detailed annual evaluations after they accepted her into the program. The medications they have recommended are filled by the PCP. Our PCP is a terrific family medicine guy, but I had to have a long talk with him and say that if he wasn't willing to follow the ADRC's recommendations I would have to change her PCP. He spoke with them and told me while he did not feel she had a severe problem, he accepted their diagnosis and would follow their recommendations.

I began to notice that the memory loss was resulting in severe anxiety that was the source of some sudden and huge outbursts. The ADRC recommended several geriatric psychiatrists. It took some time, but because I had the center's referral, I just got DW in. She spent a long time with both of us and recommended Lexapro (an SSRI) because there is no interaction with other meds DW is taking. She started her on a half dose for the first week and the anxiety was almost entirely gone. Now DW takes the full dose and says she has no side effects.

I think the combination of the ADRC for evaluation and referrals, the PCP for routine healthcare and meds, and the geriatric psychiatrist for behavioral care is a great combination that works well for us. It's been a bumpy road getting the right people involved, but well worth all the effort. Wishing you all the best as you fight for your LOs. 

Posted: Monday, July 29, 2019 6:40 PM
Joined: 3/28/2019
Posts: 2

We live in San Francisco, using UCSF.  DW was diagnosed by a team of psycologist and neurologist ... diagnosis EOD, possibly AD.  Come back in a year.  Really?  Felt like being thrown under a bus.

Following year just the same neurologist, a very cold young Asian woman (sorry, but I'm not happy with political correctness!) who did a few perfunctorily exam, ending with have the receptionist book your wife in about a year.  How helpful was that??

After I complained to the head of the department a social worker contacted me via email with lots of links for this and that.  Nothing too useful.

Wasn't until I hooked up with the Alzheimer's Association did the IMPORTANT progress start for me ... caregiver!  Took a "Savvy Caregiver" course, joined a workshop, got my wife into a workshop, LOTS of REAL help for us both!

Our PCP is nice, compassionate, but relies on referrals in the UCSF system, which I find wanting.

My take: when you and your loved one are taking this journey, better look out for yourselves ... read up, reach out, and keep perusing this website!

Andrea jane
Posted: Monday, July 29, 2019 7:55 PM
Joined: 7/2/2019
Posts: 8

Strange to read your post as I had an almost identical story today and completely understand . My LH (65) later stage 5 dementia had his neurology appt today. The doctor sat for 5 minutes and said to stay as active as possible and you don't really need to come back...go to a geriatric psychiatrist if you need further medications was his only suggestion.
So" I'm on my own " was all I could think of..." stay active" he said ...when my husband will barely leave the house and can barely talk...thank goodness for this forum where atleast we have the support of others! Nobody seems to understand that I can't even find a moment's privacy to  pick up the phone and talk about my husband or myself.

Posted: Monday, July 29, 2019 8:06 PM
Joined: 2/2/2014
Posts: 4982

A lot of folks here are asking neurologists to do the impossible.  They cannot cure or abate this disease, They cannot tell you how long it lasts , they cannot make you feel better and they cannot tell you how to cope.   Once they are convinced of the diagnosis of Alzheimer's (an incurable unpredictable disease), they are done. 

They are not nurses or psychiatrists or social workers or therapists.  They identify brain and nerve disorders and treat the ones that are treatable.   Alzheimer's is not.


Andrea jane
Posted: Monday, July 29, 2019 8:14 PM
Joined: 7/2/2019
Posts: 8

Dear Crushed, I agree with you, a neurologist basically assesses, has the MRI ordered and gets the testing done to evaluate the situation. Our neurologist then looked at me and told me that he could do no more and I understand that. It's just a lonely feeling that we all understand ...I'm thankful for everyone here that have suggestions as we continue on this journey as it seems that there is no one overseeing medical professional to guide you.
Posted: Monday, July 29, 2019 8:48 PM
Joined: 6/20/2016
Posts: 2109

I'm not a doctor, and I only saw a written diagnosis of Alzheimer's (because nobody dared to say the word) and I knew there wasn't anything that could be done.  I had no expectations of the neurologist and he didn't disappoint.  Rolled in on a rolling office chair, spent 5 minutes with us and rolled right out.  There's nothing he could do, nothing any neurologist could do.  They decline over years and then die.  That's it.  You can try Aricept and Namenda and their generic equivalents and tell yourself they're helping but nothing will stop it.

The psychiatrist, however, was extremely beneficial and responsive.
Posted: Monday, July 29, 2019 8:52 PM
Joined: 1/25/2018
Posts: 574

In my DW's case we saw 2-or 3 neurologists for a different problem that was at the onset of her AD(I didn't know that then). Blinding severe headaches that drove us both to distraction. Nothing worked for them then, nothing helps them now. All the work-ups reveled nothing of note. All that told us is her memory issues that cropped up in the next 6 mos. weren't from any treatable cause- thus the Alzheimer's diagnosis. I've never had a desire to return to a neurologist. She saw a geri-psyc for a year or so who made some useful tweeks to her antidepressants. On follow-up appointments when asked about her depression symptoms she always answered "I'm just great, you've done me so much good." Most visits she refused to have me back with her. We stopped the useless every 3 month follow-ups.  Since that time our PCP has managed all of her care. We no longer even see her endocrinologist for her diabetes- to what end? Ultra tight glucose control on a patient who is non -compliant on every other aspect of their diabetic management? Our PCP does a fine job and it is one less difficult trip out for my DW in late stage 5/ beginning stage 6. When she remembered her endo doc it would be worth the co-pay just to have a friendly visit. At her current stage I'm just happy she remembers me.
Posted: Tuesday, July 30, 2019 5:41 AM
Joined: 4/6/2014
Posts: 375

riajean wrote:

Not that I don't know this will happen - when, who knows, but his early onset seems to be working fast.  Tonight he's telling me his Solitaire game isn't working anymore.  What isn't working is his brain telling him how to play.  He tried to explain what he thinks should happen but had a hard time.  I showed him how the game is to be played but he seemed adamant and reluctant to believe me.

My wife likes to play solitare also. I found a game called "Simple Solitare" that allows you to choose one draw over the three draw. It also has a "Easy" or "Standard" selection. I found it in MSN store and it's free.

Posted: Thursday, August 1, 2019 12:06 AM
Joined: 5/7/2018
Posts: 353

My DH is fortunate to have a Cleveland Clinic brain health branch here in Nevada, so we regularly see his neurologist. When my husband, who was diagnosed at age 65, started having delusions that involved me being a stranger trying to hurt him, he would literally force me to leave my own house. He was very aggressive. There were worse times as well when he stopped taking all his pills, and then doubled up on them (this was when he seemed still responsible for taking them every morning). This ended up with him being in a geriatric unit in a hospital that treats drug addicts, mental patients, etc. He was monitored while he was there by a geriatric psychiatrist. The result? They had him so drugged up that he could hardly move. I took him out after two days, and we had an immediate visit with his neurologist, who was shocked at how drugged he was. To get to the point, we have him on an anti depressant as well as an anti psychotic. We tried without the psychotic but the delusions came back. We tried him on the lowest dose. The delusions came back. He is now on a moderate dose, and although it makes him a bit apathetic and voraciously hungry, he no longer has dangerous delusions. I guess my point is that in our case, the neurologist is better than the geriatric psychiatrist. But again, we are at a brain health clinic that specializes in brain disorders and also runs clinical trials. Not everyone has that advantage. And he has progressed very rapidly, which in studies has shown that people who get it at an earlier age progress faster in most cases.