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What A Day, What a day.
BillBRNC
Posted: Monday, May 9, 2016 7:32 PM
Joined: 12/2/2015
Posts: 1018


I've been holding off posting until after my follow-up at the memory assessment clinic today. Very interesting, very infuriating. The doctor I had for the full evaluation a few weeks ago is a geriatric doctor who has specialized in Alz and other dementias for about 25 years, nothing else. By all accounts, top in her field. The radiologist that read my Pet Scan also specializes in Alz and other dementias, and she handles all of them at the medical center and has for many years. So I had a really good first team. I got a rock solid diagnosis of Alz and/or Lewy Body Dementia, probably mix of both. The geriatric doc is leaving the medical center at the end of this month, so she passed me to a highly qualified doctor, only he spent his career as a radiation oncologist, who went back to school and got a masters in dementia counseling or something, then joined this program. He didn't even look at my Pet Scan resport, but felt confident that I might have some form of mental illness. When I asked him about the Pet Scan, he finally looked at the report and said he didn't think it was solid. Yada, yada, yada.... He added antidepressants to the Exelon and told me to come back in two months.

I'm leaving out the part where the original geriatric doc told us in front of him that the Pet Scan was "not soft at all, but solid" for Lewy Body and/or some Alz. She also was questioned by my wife the family doctor who tried to get her to soften her opinion, and she stayed solid and firm.

Anyway, on the way home I told my wife I would not be going back to the medical center again, as I didn't need a second or third or fourth opinion, and that I felt confident the geriatric doc and the original radiologist knew their stuff far better than the guy who changed fields a few years ago. Plus I know I'm not crazy and don't have any mental illness, gosh the nerve of that guy. My wife totally agreed to my huge surprise, as she felt the same as me. Oh, and I might add that my family doctor who has know me for years has written to all of them that I'm not depressed and don't have any psychological issues other than a dire mistrust of doctors who don't read Pet Scan reports.

 Bottom line. I'm sticking with the first string, going back to my family doctor (wife's partner) and let him take me on from here. He can handle the medications, which is about all anyone can do. He likely will talk with a local neurologist if a question comes up about a medication, but I will not be going to anyone else. Get another opinion, then you have to get another opinion, then another. I went to the best place, got the best they had, and got my answers. Now I don't plan to listen to a refried doc tell me I'm crazy.

Onward and upward as they say. And, and you guys are stuck with me for a little while longer. Good luck to us all.

 

 

 

 


llee08032
Posted: Monday, May 9, 2016 9:12 PM
Joined: 5/20/2014
Posts: 4408


Bill,

How disappointing to have a Dr change so soon after diagnosis and then have him say you have a mental illness! When Dr's say a person has a mental illness or depression they need to at least explain "very clearly" how the conclusion was drawn.


Gig Harbor
Posted: Monday, May 9, 2016 11:36 PM
Joined: 3/10/2016
Posts: 1161


Bill, I'm sorry the second doctor did not meet your expectations. I know you had high hopes for him. I agree with your decision to stay with your family doctor. That is the person who knows you the best and there really aren't a lot of drugs to choose from. I am glad you plan to be here for the long term. I have said it before but you are one of the most articulate posters on this site and I enjoy reading your posts.
alz+
Posted: Monday, May 9, 2016 11:56 PM
Joined: 9/12/2013
Posts: 3608


Bill, you handled it well. Seems like you came to a moment of accepting it is something, and now how to live pretty good with the abilities and problems you have.

It really irks when someone is PAID for jumping to some shaky conclusion based on faulty information.

As a woman who has been insulted by so many people over my life, I did once have a moment when being diagnosed by neurologists as "attention seeking menopausal unmarried female, depressed etc etc". It may be of use to someone else in the situation where a person you are paying for advice on your symptoms suggests you are simply "mentally ill". Usually anxious, depressed, delusional, hypochondriac...

My Big Thought was this: so what if I "was" any of those things? It did not mean I was a lesser person, and I had every right and reason to be for various reasons, one of which was eventually recognizable as dementia.

There seems to be rare respect for what we go through, all we are dealing with, imagining futures, letting go of how we used to spend our days, so much dread. 

I wish I had been able to reply to that doctor, "Yes, I may be anxious and depressed and all that but can you tell me about what might be causing this pain, this inability to sweat, the numbness in my legs, the weakness that comes and goes and this odd sense of time slowing down?"

I have had severe depression since I was very young, elementary school age, only recognizing much later that emotional states were valuable and interesting, and finding some help was a healthy logical thing to do for severe depression.

**

wishing you some interesting and fun days ahead. we can work this thing.

the whole concept of being told we have dementia and then still finding a way to live with it is pretty fabulous.



Iris L.
Posted: Tuesday, May 10, 2016 12:00 AM
Joined: 12/15/2011
Posts: 18513


Welcome back, Bill.  I'm glad you are developing a sense of confidence in your own thoughts.  I always like to deal with experts in their fields, even if it means traveling to get to them.  Refried docs, as you put it, can be a waste of time.  A principle of medical practice, as I am sure your wife will confirm, is to try one medication at a time, to assess the response to each medication.  Why add an antidepressant, when you have not had a sufficient trial of the Exelon yet?


I had two good geriatricians who left their practices after I began with them.  I thought it was me .


This month, May, will make seven years that I have been on Exelon patch.  So far, so good!


Iris L.  


Mimi S.
Posted: Tuesday, May 10, 2016 12:58 AM
Joined: 11/29/2011
Posts: 7027


Bill, That new doc is not for you, that is sure. However, since he is new guy on the street, I wonder if you would make a copy of what you wrote and send it to the head of the department or someone in a position of authority in that practice.  Perhaps your wife can help you figure out the best person.  Since he is a new hire, they should know how he disregarded the very experienced doctor and radiologist.

And do also tell your GP exactly what happened.  I would like the practice to assign you to another doctor. Personally, I agree with Iris about the new doc's antidepressant and 2 month return. 

I'm glad you have faith in your GP, but I would like to see a good neurologist overseeing things especially since you are dealing with two types of dementia .  I'd like to see your GP and a different neurologist pick up the phone and get to know each other so between the two of them, you get the best help.

Eventually, the anti depressant may be a good idea. It was for me, even though my GP and I didn't think I needed it. I still laugh, because I initially agreed to take it for two side effects that would help some then current problems. After I had been taking it for a while I realized it was helping.

I am so glad you keep writing about what's going on.


Michael Ellenbogen
Posted: Tuesday, May 10, 2016 6:55 AM
Joined: 11/30/2011
Posts: 4460


While it sounds like this doctor may be a jerk he may also be trying to rule out depression by using antidepressants and see if his problems go away some in two month. If this has never been done it should be tried in certain conditions..

 


BillBRNC
Posted: Tuesday, May 10, 2016 7:43 AM
Joined: 12/2/2015
Posts: 1018


Michael Ellenbogen wrote:

While it sounds like this doctor may be a jerk he may also be trying to rule out depression by using antidepressants and see if his problems go away some in two month. If this has never been done it should be tried in certain conditions..

 ========

 Michael, I don't disagree with you. Even the first expert suggested I might get some relief from a SSRI for mood and agitation and anxiety and such. But she wanted to wait and see about the Exelon first. My problem with the refried guy isn't that he suggested a SSRI, but that he suggested that my entire problem might be mental illness, and he proceeded to talk about he had totally cured a woman with long-term dementia by only using a SSRI. Well, I don't know about that, but I went on to ask the refried doctor how my problem could possibly be mental illness if the Pet Scan shows so solidly that I have a neurodegenerative dementia that looks to the radiologist and the other expert to be Alzheimer's and/or Lewy Body Dementia. His response was to read a portion of the Pet Scan report three times in a row. When he finished proving he could read well, I asked him if he had read the addendum to the Pet Scan report, and his response was to ask me how I knew there might be an addendum, to which I responded that I had a copy of the report. He looked and looked at his computer, then said there is no addendum to the report. I told him to please look at the second page. He then found it, read it, and said there was nothing there to change his mind. The guy came to my exam without reading the damn report, he patronized me by reading only part of the report several times, he then read the addendum (which is solid by the way) and said it meant nothing to him. Now, I've never been depressed or had any mental issues in my life, and my doctors throughout my life, including the present, have confirmed that in their reports many times. My current family doctor went to great lengths to confirm it when he referred me to this medical center so as to head the issue off at the start since it is what so many doctors say when us patients talk about agitation and mood issues due to dementia. Add to this the guy reached his glorious opinion after two minutes in the room with me. It doesn't take a lawyer or rocket scientist to know that the SOB reached an opinion before he met me, then wouldn't budge off it no matter what the objective evidence showed. This refried guy was truly an expert radiation oncologist, so he isn't dumb, but he had some type of event that caused him to leave that field and go get a counseling degree to treat dementia patients. And imagine, my problem in his opinion just happens to be exactly in the field he got his master degree in, as opposed to the medical field that the geriatric dementia specialists had diagnosed (as confirmed by Pet Scan). Call me stupid, but dang I haven't seen this level of arrogance in years. Yes, I'll take the SSRI because my wife thinks I should and the original expert thinks I should, plus I would be a fool not to admit that all this crap has caused me some anxiety and mood issues, so I hope the SSRI can help to dampen down some of that. But I have no intention of going down this forever revolving door of diagnosis after diagnosis. That is why I got an initial opinion from my local doctor, then agreed with him to get a follow-up opinion from the best around, and I had to drive two hours to get it, and then got lucky and got a Pet Scan that shows beyond question that I have dead brain cells all over the parts of the brain for Lewy Body Dementia and to a lesser extent Alzheimer's. End of rant.

 



The_Sun_Still_Rises
Posted: Tuesday, May 10, 2016 5:45 PM
Joined: 7/24/2015
Posts: 3020


I am so sorry Bill, some doctors are (excuse my French) just *sses.  Having known many peop with chronic illnesses of one kind or nother over the last 7 years...I have, frustratingly, heard similar stories way too many times for me be comfortable with.  The trouble as I see it...an I am sure many will disagree...is that be cause one doc suggested ant-depressant...second doctor see that an knee-jerk jump conclusion you nut case.  I hate that...it a personal pet peeve of mine.

I know so many with Fibromyalgia...whom they rx anti-depressants (saying they a pain med)...whom many take them wanting some kind of relief...only then be blown off by eve other doctor they see after that.  It so sad...an infuriating...

You have my support in blowing off second doc an sticking with you original one. 

Hang in there.

<3


Iris L.
Posted: Tuesday, May 10, 2016 7:35 PM
Joined: 12/15/2011
Posts: 18513


BEFORE a patient is begun on Exelon or Aricept, if there is any question of depression, aggressive treatment for depression should be attempted, including antidepressant and talk therapy, for a minimum of three months.  This is the only way to separate depression from cognitive issues, because there can be overlap.  Then, depending upon the response to depression therapy, the patient can begin Aricept or Exelon.  This is basic medical treatment.  Ask your wife.


If the patient improves on both Exelon and the antidepressant, how will it be determined which is responsible for the improvement?


Not all moods need to be treated with antidepressants.  I believe much of the anxiety and emotional responses that we patients undergo is best handled by frank communication with our peers.  We are the only ones who understand what we are going through.  I have rarely found any professional who understands.  


The only psychologist who understood was Alan in Colorado, one of our emeritus members, who was himself a psychologist and a patient.  He suspected he had FTD.  I remember he constantly railed about the professionals he had come across, who treated him the way that doctor treated you, Bill.  


Alan opened my eyes, because I believed my frustrations with my former colleagues was just me.  I learned that the frustrations are generalized, due to the cluelessness of the professional class as to what PWDs are dealing with .  They project and imagine, instead of talking directly with PWDs.


Keep  on, keeping on, Bill.  You are doing great.  You still have a sound mind about what's what.  Don't let the professionals marginalize you.


Iris L.


The_Sun_Still_Rises
Posted: Thursday, May 12, 2016 4:20 PM
Joined: 7/24/2015
Posts: 3020


I do no know if I would agree with that...an I would add, proceed with any anti-psychotic with extreme caution if dementia is a possibility. 

The reas I say this is peop with Lewy Body dementia oft react extremely poorly anti-psychotics...usually the tune of extreme exaggeration of symptoms an agitation.  All anti-psychotics are still black-box warned for use in dementia patients by FDA be cause of increase of sudden death in dementia patients. 

Now, that said, eve one will weigh that risk diff...but it bears consideration...esp if the context is patients talking each other.  Caregivers, I am sure, have entirely diff things on their minds when considering these risks.  Many who consider giving us these have already institutionalized us...or will be if we get worse on them. 

It is also important, I feel, consider mechanics of these class meds.  These meds treat chemical imbalance in brain.  Dementia, an resulting symptoms, secondary symptoms, an all the tertiary issues that peop still mistakenly consider symptoms arising from a dementia diagnosis are not, have neve been, an neve will be due chemical imbalances.  That said, a number of peop who get dx'd dementia also have chemical imbalances pre-existing...gain, something weigh an consider.

It is a hugely complicated issue.  I think it huge mistake say eve one should be given this in general.  I think symptoms an possibility of Lewy bodies needs be considered be fore considering trialing them.  That is just my opinion this matter...I just feel it bears posting so peop do not get wrong impression/information. 

<3


BillBRNC
Posted: Thursday, May 12, 2016 4:43 PM
Joined: 12/2/2015
Posts: 1018


Iris, you have a really good point about the start one first and see approach. I guess the good refried doctor must actually believe the Pet Scan. Well, I was talking last night with my wife about the depression thing, and I told her that a whole lot of my anxiety, anger, agitation and such were due to my intense frustration with getting to the right doctors and getting a Pet Scan so I can know what is really going on. I don't need to know all the finer points, but just the bottom line. Heck, I have told all the doctors that I don't care which form of dementia I have, I just want to know if I have a neurodegernative dementia. The rest is just so much noise to me, other than knowing about the Lewy thing because that means exercise caution with certain drugs. Most dementias are mixed dementias anyway, so chasing our tails instead of living our lives makes no sense to me. I just want to get my house in order, do what I can do, then forget about it and live my life. I had planned on leaving this Board for good because it makes me thing about dementia too much, but I realized that it is the single best thing I can do to help myself to help myself. You guys have been there and are doing it. I just got here, so I've got some learning to do about the living with disease part of things. I'm taking the SSRI because my wife wants me to, not because I think I need it, but because she wants me to take it. Seems like a small thing I can do. I am concerned about Iris' point, and I'm going to bring that up with my wife tonight at dinner just to make sure she and others have thought about it. Thanks.
jfkoc
Posted: Thursday, May 12, 2016 6:23 PM
Joined: 12/4/2011
Posts: 21248


Bill...this is one of two books by Ahlskog

http://www.amazon.com/New-Parkinsons-Disease-Treatment-Book/dp/0190231866

Lewy body has a bunch of stuff on youtube


Iris L.
Posted: Friday, May 13, 2016 12:46 AM
Joined: 12/15/2011
Posts: 18513


Bill, there are two things I wanted to mention to you.  I am always bringing up things that I learned from emeritus members.  Snowy Lynne is one of our emeritus members.  She used to tell us, get your affairs in order, then go live your life!  In other words, don't focus on dying, focus on living.


The other thing is this.  You posted in the past about sudden bursts of anger and aggression.  A theory that I have thought about, which also came about by posts from Alan in Colorado, another emeritus member, is this.  I believe that physical exertion and activity to the point of fatigue can be used to modulate aggression.  


The problem is, you, having a serious heart condition, can have only so much activity.  But perhaps, in consultation with your cardiologist and others, you may be able to determine a level of activity which can modulate your bursts of aggression.  Perhaps, several brief sessions of activity per day would be effective.  


The activity might not be only aerobic exertion, but perhaps using resistance bands, or small weights, or something similar, to exert your muscles.  This might be an alternative to medications, or a help to reduce the dosage of psychoactive medications.  Think about it.


Iris L.


llee08032
Posted: Friday, May 13, 2016 6:17 AM
Joined: 5/20/2014
Posts: 4408


My Dr increased SSRI to help with anger and agitation.
Unforgiven
Posted: Friday, May 13, 2016 2:21 PM
Joined: 1/28/2013
Posts: 2659


Bill, serotonin is the mental version of the synovial fluid in your joints -- it moderates and cushions your emotions.  It also helps with memory.  I know the first reaction is to think that your doctor is implying you're a nutcase because you don't feel depressed, as in sad, boo-hoo feelings.  But once I learned the brain science behind the SSRIs, I vowed to be on them for life.  I'm prone to clinical depression, having come from a long line of self medicating substance abusers and even while I never felt 'depressed' I would get lethargic and emotionally volatile when under too much stress.  Your brain is like mine, lacking in serotonin, feeling like a worn out brake grinding metal on metal.

I feel much better now.  I don't want to put my fist through a wall when frustrated anymore.

My other suggestion is to find a good personal shooter video game and go to town killing zombies, aliens, or other people who richly deserve it.  LoL


BillBRNC
Posted: Friday, May 13, 2016 3:10 PM
Joined: 12/2/2015
Posts: 1018


Yes, I have high hopes for the SSRI. Everyone seems to say good things about them, particularly for those with our problems. I'm looking forward to pushing up the dosage. I don't think I'm having any side effects yet, but hard to tell with Exelon going at the same time. But most of the Exelon side effects seem to have gone away, but they are supposed to come back when the dosage is increased. I guess it will just take some time to find the correct mix and dosage of meds, or failing that to find some alternatives. I really don't have a lot of say in this, as I can't see going against my wife when I have no experience with these drugs. If they work, then great. If they don't or the side effects are bad, then even my wife will support stopping. The fact is the Alz meds aren't all that great anyway, but I guess better than nothing. I assume the SSRI is all upside with minimal downside. Time will tell, but it is nice to hear from someone who has benefited and also has some of my same issues. Thanks.