Need to vent after DH Neurologist appointment
My DH had his 2nd appointment today and a waste of time. After nine months, my DH memory has worsen. I listed things I see that have changed. While he still has some good things going for himself, he is showing some decline. The neurologist again diagnosed him with MCI. I requested a pet scan. The neurologist said he sees no need for one. He knows my DH does not have Frontal Lobe Dementia and a pet scan would not be helpful.
He would prescribe Namenda if DH gets worse. Seeing my disappointment offered to refer me to another neurologist for 2nd opinion. After explaining my reasons for pet scan…he still suggested I get another opinion and could arrange it. He will not order one!
My DH was a clown at the appointment I think due to his nervousness. From the beginning my DH journey has been wanting a pet scan. We discussed 2 days ago and in agreement. So what does he do, but agree with the doctor! I told the doctor my DH and I will discuss further and would get back with him about 2nd opinion. There is only 1 other neurologist so that will mean starting over and wait to get an appointment.
Thought a pet scan would show amyloid in brain and finding a right treatment.
So frustrated with the medical system. I poured myself a glass of wine when I got home.
Comments
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I’ve been where you are. My husband will never go back for testing or neurologist. We live in a remote area, and have to travel over 6 hours to get to a specialist. We both were disappointed. We were told possible MCI and only time would tell. Our current local GP is more involved in helping us out. For us, we know he has what he has, and it’s progressing. But his choice is no more testing. I’m sorry for your disappointment.
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I am sorry the appointment didn't bring you more clarity. I understand your frustration.
Dad was seen at a top-notch teaching hospital Memory Center. While I feel dad's neurologist did an appropriate workup and diagnosis, he didn't bring much to the party and after a couple follow-ups, mom and decided we'd had enough. Dad's geri psych was a much more useful member of his care team.
TBH, dad's doctors tended to consider him less further along in the disease progression than I did. Dad tended to showtime in front of doctors. It always amazed me that those working with PWD don't seem attuned to this feature of the disease in which they're experts. I think another cause of this was that dad tended to do better than expected on the quick screening tools like MMSE, MoCA and SLUMS than expected.
I sat in on the last MoCA dad ever took about 6-9 months before he died from aspiration pneumonia. Dad had no problem with serial subtraction despite being unreliably continent, bit recognizing the town in which he owned a business for years and being rocky on his feet. At the end the doctor remarked how well he did and dad bragged about being "off the charts" the entire way down to the valet stand where he toddled off behind my back and got in some random little old lady's car. Off the charts indeed. Dad was also well behaved for this doctor which made him reluctant to prescribe psychoactive meds until I sent him video clips of dad acting out at home.
Dad had a PET scan as part of his workup. His was to differentiate between Alzheimer's and WKS based on the metabolism of glucose in different parts of the brain. It led the doctor to give dad a mixed dementia diagnosis based on the results-- he had features of both. Dad's initial neurologist considered a spinal tap based on the history mom gave to rule out a prion disease but canceled it after talking to me. (dad was initially diagnosed in the hospital after a psychotic episode-- mom had been in denial of dad's issues for almost a decade and reported dad's symptoms as sudden onset while I saw subtle changes over the years)
The results of the PET scan didn't change treatment for us, but I think mom needed to see the test results to get out of denial and take the steps necessary to take charge of their lives. Like many PWD, dad had a ansognosia and could not appreciate the degree to which he was impaired, so being told his diagnosis meant nothing to him except making him angry about not driving.
That said, this was before injectables, so there wasn't much any doctor had to offer beyond meds to dial back dad's anxiety and agitation. If you aren't happy with this practice, I would find my own neurologist-- perhaps at a teaching hospital memory clinic-- and get a second opinion.
HB
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For us, we know he has what he has, and it’s progressing.
I'm with you Trottingalong. I'm at the point where what good is it to go to the neurologist any more. Last appointment was at 3:00, showed up at 2:30 to be advised he was running about 3-4 hours late and we could come back at 4:00. So I thought we would have to wait 2-3 hours which would only agitate DH at peak sun downers time. At that point the little light bulb above my head went off and it occurred to me he isn't going to tell me anything I don't already know. It's getting worse and there is nothing that can be done. I canceled the appointment, we went home and I made a nice dinner.
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I have to agree that the neurologists have been less than helpful in dealing with the day-to-day problems. We went to a new one after moving, waiting 3 months. As it happens, my DH has severe Restless Legs Syndrome and they seemed to only want to deal with that, and only to want to work with his medications for that. When I kept saying, his memory is bad and I'm concerned about his safety they had little to offer. They ended up referring us to a gerontologist, but who knows what that person will say. Appointment is 2 months and an hour drive away. I'm just plain tired of doctors who don't really have much to offer. Yes, I know that's the state of things today, but still...
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I have also been amazed at how unhelpful our neurologists have been. For example, at our first appointment, the neuro gave my DH the MoCa test in a rather pushy, intense way. He scored very low (14/30something? I think) and the neuro told both my husband and me in a no nonsense manner that he had moderate dementia and needed a full time caregiver. He also said he needed a spinal tap, which terrified my DH. Of course, my DH with anosognosia, was terribly offended and upset. It took three days to calm him down. I then got a referral and an appointment with a neuro at a large teaching hospital, hoping for something better. I found this next doctor to be much better with the compassion piece, but when I asked him, privately, if my DHs long winded accounts of somewhat made up topics was cause for concern, he said he had never heard of such a thing. He suggested more exercise! Now - we are scheduled to schedule a PET scan and I'm trying to decide if its worth it or not. TBH - you all here are far more helpful and aware of all things related to this disease and I am absolutely grateful for all of you!
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I’m on the opposite side here. I love DH’s neurologist because he is not endlessly testing. No PET scan. Fine with me. DH is severely claustrophobic. The idea of getting him through a PET scan terrifies me. No spinal tap. No problem. Neurologist listens to what I report and and adjusts meds based on it in addition to in office testing.
Alzheimers is progressive. DH is on the currently available meds. It’s not going to get better. DH’s PCP won’t prescribe the meds. So is neurologist for us.
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We happen to live in a university city with an ADRC (Alz Disease Research Center). The MD in the gerontology clinic happens to be a PI on many of the studies, so my partner was connected to everything under the sun, including a PET scan as part of a study of some sort. And, once it was established that she likely (ha) had AD, they sort of dropped her like she wasn't interesting any more. She's never seen a neurologist. Geriatrics Clinic referred her to an awesome geriatric psychiatrist, and between him and the NP in Geriatrics that's all we've needed so far.
If a neurologist isn't going to be the right specialist for you, maybe think about what you really need and want, and figure out who's the go-to person locally. Find the local support group? talk to your primary? it may be someone in geriatrics or even internal med. You want someone you'll have a rapport with so you can skip the frustrating appointments and have frank conversations so you can get what you need.
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Neurologists are primarily for performing diagnostic tests and rendering a dementia diagnosis. My neurologist referred me back to my PCP after diagnosis, but my PCP refused to prescribe my meds, so my neurologist kindly allows me to continue to see him for medications. After a few years, further testing revealed that I do not have Alzheimer's Disease.
Iris
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I took my mother to both a geriatric psychiatrist and neurologist for years. The geriatric psychiatrist was by far the more helpful for us. The neurologist would mostly say there was nothing much to be done but I still felt the combination of the two was best for the time. I recommend finding another doctor that will be more helpful to you too.
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This is so sad, frustrating, and painful to read. In 1.5 years my mom has now seen by 4 neurologists - the first from teaching hospital did no follow-up with me, even when MRI suggested possible NPH, and was never informative or responsive (by the time they called I had googled everything they told me); others at a large university hospital agreed on one part of her dx but didn’t have much else to offer. Even the neurosurgeon wasn’t that helpful.
But trust me @justbreathe2 your advocacy matters. Keep pushing, and you will find someone useful. My mom’s primary care doctor became super helpful, but only AFTER I burst into tears in her office because no one - including neurologist at the time - was taking her condition seriously. Since her diagnosis of NPH + dementia unspecified, no one has much to offer. She has an upcoming appointment at a renowned memory center if she’ll go, but my expectations are low. Her memory care doctor is good - knows her issues, is responsive and is helping to figure out meds for anxiety, sundowning and hallucinations.
But overall, the medical establishment has left me so disappointed. I am still glad I pushed. I learned so much. I hope the wine helps. This is a marathon, not a sprint. I’m glad you are educating yourself now.
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Thank you all for your helpful comments.
We have very few neurologists in our town. In fact, we have lost many good doctors who were not happy with our hospitals. Not sure if I want to go through the waiting game. I plan to talk with our PCP about medications and care for my husband. We like him but he does not have any Neurology background, so not sure how much he will be of help with medications. Will talk to him about a geriatric psychiatrist for my DH, but that will not solve my problem with wanting him to have a pet scan because I think the Neurologist has to order it.
My husband is no longer in denial. He talks often about not being a burden. Of course, I try to keep positive with him and not let him see my disappointments. Although he could see by my face I was not happy with Neurologist yesterday. The Neurologist said a pet scan would not be of value. I wanted to say back to him and you are no value to us...but I didn't.
Think I need to stew about it for awhile and decide what to do.
I appreciate all of your feedback.
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Jb,,just curious about what you think you will gain from the PET scan? Sadly i think the neurologist is probably correct here, although i am not supportive of the way you were treated. I do not see how the results would change treatment.
I think part of everyone's frustration here remains the hopeless nature of this disease. Unfortunately that's still the case for a lot of neurologic diseases. I never took my partner to a neurologist, but we were blessed with an excellent internist.
I'm sorry it's so hard and frustrating.
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I had two PET scans, both under the auspices of two different clinical trials. You might inquire about a clinical trial. Go to clinicaltrials.gov or call your local AA chapter or your major university medical center.
Iris
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M1, since we started this journey 2 years ago, there has not been much effort to diagnose my DH. Only the 2 hour testing by neurophysicologist followed my an MRI. The scan of the brain told that there is age-related atrophy and there was some microhemorrhages which could be from amyloid angiopathy. He failed the testing, and the neurophysicologist said he did not have time to meet with us to explain the testing vs. MRI.
There were several times years ago when my husband had some episodes of trauma/stress and soon after that saw changes in his personality over the months/years. Blamed some of it on his retirement because it was a difficult time for him and me. I always wondered if he may had several strokes that caused these changes. I have read that an MRI will not show TIAs.
Maybe it's just me wanting to cross off one more thing off the the list. The MRI did show just a tiny amount of gray matter that our physician at that time said it could be age related. She said the aging population would all have some if everyone had an MRI.
We were unhappy from the beginning. The neurophysicologist explained areas my husband failed the testing, but did not show us the test or his answers. Said he did badly for his education/jobs. He told my husband at the same time he should not drive or fly. We were in shock because at that time my DH was doing better than today, but had memory issues. We were not concern with driving then. But he has given up both driving and flying.
I have felt helpless. I do accept that he does have dementia, but want to know all I can and wish the medical people would have more empathy for people with memory issues. It is a helpless disease. Sorry for the long explanation. I know it's a grieving process I am going through.
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My husband is 6 years in with some type of dementia. My sister is in a nursing home for dementia related to a TBI at age 18 (now 72) and my brother passed this past August with Lewy Body dementia. Doctors have been less than helpful in any of their journeys. In defense of the doctors, you don't know what you don't know. My husband is a great show timer at the doctor's office. And in the end, nothing is going to change the outcome so I have decided to let things be. My husband has anosognosia and refuses any "brain tests". My goal now is to keep him calm and safe. He could use anxiety meds and when I brought this up he said "I know my body better than anyone and there is nothing wrong". As the disease progresses I will probably need to reassess.
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JB i agree completely that the way you were treated over the years is despicable. After a tough medical year myself (being a very sick patient and not the doc) i very much realize how broken the system is. But frankly, most of the problems i lay at the feet of the practitioners. They could do better, but I honestly think they are overwhelmed by the system also. They are burdened with seeing too many patients in the pursuit of profit, and communication failures and compassion fatigue are the result. I know enough to know when to be the squeaky wheel and have enough friends still very active in the medical community that when i wasn't happy with the answers i was getting, i had clear alternatives and I know I was given priority because of the jnitials behind my name. It infuriates me that you have to fight to get what you need out of our medical system. It is not the "best in the world," by any stretch, as the politicians like to claim.
I think you are right that you are grieving, and i think it's pretty clear that you should continue your search for a compassionate doc who can help you both. But i don't think any additional imaging procedure will change anything for you, sadly.
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Thank you M1. I appreciate your comments. Yes, I will be talking to our PCP about care.
I agree that doctors are overloaded. I do try and remember that.
My DH would only agree to going to Barnes at the beginning of his journey. After waiting a week for a call back they said it was a 2 year wait and he would be a study. It was same at Mayo. My DH did not want to be a study so that is the further we got.
A friend from gym said he got his wife into Mayo. He said it took months and worked hard at it. He knew a few doctors that helped in to get an appointment. In hindsight wished we hung in on a wait list because we are coming on 2 years.
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There is a new anti amyloid drug from Lilly slated to get FDA approval this year. Some hope.
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I’m not sure that a PET scan would tell you anything more than what the neurologist has. However if you don’t feel comfortable with this neurologist, then try for one with a sub speciality in dementia. Not all neurologists treat every neurological disease. Mom had an MRI several years ago and a more recent CT scan. The neurology NP at the memory clinic stated there was some frontotemporal atrophy and some micro ischemic changes. She diagnosed her with MCI 3 years ago / and continued to claim it is MCI. Ever time she sees Mom, her MMSE score has improved. Yet I firmly believe mom is in the mild dementia stage rather than the mild cognitive impairment stage. A PET scan has never been suggested. At this point, whatever it would show wouldn’t going to change mom’s life or even her medications. There is nothing thats going to fix mom. She gets her donepizel from the NP. A different neurologist treats her neuropathy. Her psych residents order her anxiety and depression medication.
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I have found our neurologist cold and unhelpful. We established with her nearly 5 years ago and when we moved away, we thought we'd keep her, as we still go down to the bay area to see family. We don't have a diagnosis other than MCI complicated by anxiety and caregiver stress. Our last visit, she essentially fired my DW as a patient, even after we told her that we're seeing a clear progression. She was, "Just doing this for our benefit. It's too hard for you to drive down here to see me." I was so damn shocked and then pissed, I just said fine and we're in the process of trying to find a new neurologist. Exactly what I needed to have to do in the middle of all this. What a jerk.
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Question about flying: Is it common to recommend against flying with a PWD? If so, does that depend on symptoms?
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The big thing that concerned me was using the teeny tiny bathroom! I would not go on a long flight. Probably 2 hours max.
Another concern was change of surroundings. That always takes a toll.
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@CindyBum Definitely deserves a "did you really just say that to me?" medal. Infuriating and disrespectful. It sounds like she did you a favor though. Who needs a Dr. who doesn't want to work with them? Especially when the diagnosis sounds like maybe a little blaming and shaming of you as the spouse CG. "Caregiver stress?" ya think?! But that doesn't cause our LO's dementia. And if she documented you in this semi-negative fashion, yes she is not the one for you (or me). We know from the degenerative nature of dementias that he is not likely MCI for 5 years, if that is what you are saying (?). And a note that you are aggravating his anxiety? What? I'd be P.O.'d too dealing with someone like that.
Yes, it is a drag (understatement) to have to search and change docs while in the trenches of caring for a PWD LO, and you may need to try more than one new PCP, neuro, or geri-psych. But I will bet you can find one or more who will be so much better for you and your LO. That is my wish for you asap. In the long run it will be worth it. You've given this one the benefit of the doubt long enough. I'm irritated FOR you, that the poor bedside manner at the very least, was totally uncalled for.
FYI, we are fortunate to have the same neuro team but switched DH's tone-deaf, dementia-and UTI-ignorant long time PCP in favor of a geriatric specialist, and then overall hospice team. With a few hits or misses in between when encountering a wide range of personalities and (lack of) knowledge among the Dr's when palliative care kept sending us to the ER as DH declined. And yes, that included a fair share of Jerks (capital J) who felt their position gave them power over me and DH (it did), but their attitude and disregard for my superior knowledge of his condition, history, allergies, current dynamics, and even likely solutions created more caregiver stress and actually endangered my DH on more than one occasion. Definitely caused him discomfort, pain, suffering longer than necessary while they experimented etc., due to not listening to me.
He suffered needlessly more than once as a result of this major blind spot in the health system, where some medics are dismissive and even antagonistic toward family, spouses, (and perhaps wives? in particular). I think that is elder abuse really. And for Early/Younger onset PWDs it is abuse of a person with disabilities. I'm sorry you have had to deal with this, but again, good riddance in my view. What's that country song about the rear view mirror? That part. Sending hugs. You got this.
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FWIW--if you have access to sites that review docs and have the energy to write a review, do so. Be frank. Most practices have administrative people watching these reviews now, just like businesses do. I don't advocate medical practices being run like other businesses, but that's the current reality.
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@justbreathe2 @CindyBum and anyone else dealing with a dismissive or even antagonistic/hostile Dr. Sometimes it is just time for a change. Here's the theme song!
Jo Dee Messina - Bye Bye (Official Music Video)
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@ButterflyWings "He suffered needlessly more than once as a result of this major blind spot in the health system, where some medics are dismissive and even antagonistic toward family, spouses, (and perhaps wives? in particular). " You might be onto something there. My wife (an RN) used to tell me that many doctors treat men and women differently. I think that is still the case in many instances.
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Thank you for your comment. I read everyone’s experiences with their LOs journey and it has helped me the last 9 months.
Thinking over having the Pet Scan would only bring my DH more stress and I don’t want to put that on him. It would only be of value to me.
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I am sorry you had such a horrible neurologist too. Good riddance to her. Sadly, I have been hearing more bad experiences with Neurologist. I wrote an unkind review on my DH neurologist and will do again. Beginning to see no purpose in having one if I can have my PCP or other to handle medications. It only adds more grief, anger and frustration to me.
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Justbreathe2 - when they told your DH not to drive or fly - did they mean fly as a passenger or fly as a pilot?
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He was a pilot for many years. Later flying with only a friend an instructor when having memory issues; he was told it was unsafe. Very difficult for him to give up. Felt he could still fly.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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