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no beta-amyloid plaques
Iris L.
Posted: Wednesday, October 19, 2016 3:51 PM
Joined: 12/15/2011
Posts: 18520


My neurologist gave me good news yesterday.  The results of my Amyvid PET scan done two days ago showed scarce to no beta-amyloid plaques.  This essentially rules out Alzheimer's Disease as a cause for my long-term memory loss and impaired executive functions.  This was indeed good news!


I asked my neurologist, who specializes in the dementias and does research, then what is the cause of my long term memory loss, beginning in 1987?  He stated that it was probably due to effects of systemic lupus or sleep apnea.  These are both conditions that I suppose I have had for many years, although I was not diagnosed until years after memory loss began.  The neurologist suggested that I discuss with my rheumatologist having a spinal tap, to look for evidence of active auto-immune effects from lupus in my cerebrospinal fluid.  If so, immunologic chemotherapy could be offered.  My rheumatologist believes that I have been in remission for several years.

Naturally, I am happy to learn that I don't have Alzheimer's Disease.  I was prepared to accept that was what I had, especially since there is a family history of memory loss with clinical diagnoses of Alzheimer's Disease in extended family relatives.  In those days no tests were done, they had memory loss and were diagnosed as having AD.  


I also have had older extended family members with what might be called MCI.  I see myself like them.  One had changes due to one or more strokes, for the other I am not aware of her medical issues.  


Until the rheumatologist tells me something different, my treatment plan will continue as it is today.  I will continue with Exelon patch and Namenda XR.  The neurologist said I could have a trial of weaning off these medications, but I am unwilling to attempt weaning at this time.  


I will continue with Best Practices.  I will resume CPAP and monitor my blood pressure and Hgb A1c levels for diabetes.  I will also keep an eye on the mild atrophy in the cerebrum that was shown on my MRI for the first time last year.  The neurologist said this could be due to systemic lupus, also.  He also mentioned possible physical changes to the hippocampus due to sleep apnea and lack of oxygen.


The Amyvid PET scan was done as a participant in the IDEAS (Imaging Dementia--Evidence for Amyloid Scanning) Study.  The cost to me is covered by Medicare.  


It has taken me over seven years to get to this point and I am glad to have some definitive evidence of what might be going on, or rather what is not going on with my brain.


Iris L.


julielarson
Posted: Wednesday, October 19, 2016 3:57 PM
Joined: 9/30/2015
Posts: 1155


Iris this is wonderful news..
TayB4
Posted: Wednesday, October 19, 2016 6:10 PM
Joined: 8/8/2014
Posts: 886


I am very happy for you Iris. 
Lane Simonian
Posted: Wednesday, October 19, 2016 7:53 PM
Joined: 12/12/2011
Posts: 5161


This is very good news, Iris.  Both sleep apnea and systematic lupus can cause cognitive impairment and Best Practices likely helps with many forms of cognitive deficits.  I am glad that you can finally have some peace of mind.
The_Sun_Still_Rises
Posted: Thursday, October 20, 2016 7:21 AM
Joined: 7/24/2015
Posts: 3020


Great news...you not going die.  <3  Doing a happy dance for you.
llee08032
Posted: Thursday, October 20, 2016 8:03 AM
Joined: 5/20/2014
Posts: 4408


Iris...this is wonderful news! I am happy for you! (((((Iris)))))
BillBRNC
Posted: Thursday, October 20, 2016 8:28 AM
Joined: 12/2/2015
Posts: 1018


Iris, this is really very great news. I know you've been very confused and concerned about the source of your cognitive impairment, and at least now you can rule out a couple of causes. I hope you plan to stick around here, as you were one of the best welcomes I had when I first arrived here, plus a source of tons of useful information. Thanks and good luck. Bill.
Mimi S.
Posted: Thursday, October 20, 2016 9:01 AM
Joined: 11/29/2011
Posts: 7027


iris,
I like your attitude.

 My question is: Are we absolutely sure that having no plaques means no Alzheimer's? And note that only AD is mentioned, not other types of dementia. 

 I have another friend who received the same news and he does not have lupus.

 

Maybe this is one of the things that defines how fast we decline? Maybe those of us who have been around a long time don't have plaques, but we know we have something.

 

I still want answers to the findings of the nun's study: those nuns who had plaques and no sign of dementia.
The_Sun_Still_Rises
Posted: Thursday, October 20, 2016 9:33 AM
Joined: 7/24/2015
Posts: 3020


You raise a good point, Mimi...thanks.

Yes, that is very true...people can have alz and no atrophy....and other people can be fine and have a lot of atrophy...so these tests really don't truly say much do they.  But, it is still nice news hear. 

I guess, however, we wait on progression...if no progression...life good.  I am glad Iris does so much proactively care for herself keep this stuff at bay. 

<3

 


Mimi S.
Posted: Thursday, October 20, 2016 9:37 AM
Joined: 11/29/2011
Posts: 7027


Oh yes.

Iris we know how much we love your fighting spirit.


Iris L.
Posted: Thursday, October 20, 2016 10:24 AM
Joined: 12/15/2011
Posts: 18520


I am very familiar with the nuns' study.  I have long believed that there are different conditions characterized under the label of "Alzheimer's Disease."  There are those patients with classic Alzheimer's Disease, who follow a steadily progressive course.  And there are those whose course can be modulated by various factors.  We don't know who belongs into which category.  With our sophisticated modern testing, we are learning to be more specific about the different diagnoses, and not everything will be called Alzheimer's Disease by default.  


Before I began my treatment, I had symptoms which put me into Stage 4 of Alzheimer's Disease.  I don't know if I had plaques before, which are now gone, after seven years of treatment with medication and Best Practices.  That would be a tremendous finding, if it were true, because it would mean that AD could be reversible!  We will never know.  


This just goes to show that there are other causes of memory loss besides amyloid plaques.  Sleep apnea causes memory loss due to pathology in specific brain cells in the hippocampus.  There is a tauopathy that causes memory loss but does not involve amyloid. Also, leukoariosis has been introduced as a cause of memory loss.  This points to the need for more research and for continuing the treatment that we already have, even if we don't have all the answers at the time we begin treatment.  


I am very glad that I have a neurologist who has agreed to continue to be my doctor, because he has continued to search for answers for me.  At the time he prescribed the Exelon patch, he told me I could be followed by my PCP.  My PCP has no knowledge of dementia or performing further diagnostic tests.  It think it is important for patients with a diagnosis of cognitive impairment or one of the dementias to be followed by a neurologist or other specialist, such as a geriatrician.  Our brains are too complicated for a PCP to manage alone.


I will continue to be a participant on these boards.  I still have memory loss and impaired executive functions.  My diagnosis is still cognitive impairment not otherwise specified, possibly due to systemic lupus and/or sleep apnea.  Or even something else (leukoariosis).   This message board should be for patients with dementia, cognitive impairment, and for those who might have these conditions.  We are ALL searching for answers for ourselves.


Iris L.


  


Mimi S.
Posted: Thursday, October 20, 2016 10:29 AM
Joined: 11/29/2011
Posts: 7027


Amen
jfkoc
Posted: Thursday, October 20, 2016 11:35 AM
Joined: 12/4/2011
Posts: 21250


Amen from me also...there would be a big  hole if you left.
rosepoint
Posted: Thursday, October 20, 2016 2:02 PM
Joined: 1/22/2014
Posts: 573


Iris that is great news!  I am following your updates closely as my DH has lupus, sleep apnea and cognitive impairment.  DH has not had that scan but I am looking into it.  We are talking to his neurologist about starting the memory meds in the next few months and I hope he does as well as you have done on them. 

Please stay on the board and share your knowledge.  You have been very helpful to me.


Mimi S.
Posted: Thursday, October 20, 2016 2:05 PM
Joined: 11/29/2011
Posts: 7027


Rosepoint,

May I ask what reason was given for waiting months to begin the meds?  Functions lost while you wait may not be much but they are gone.


rosepoint
Posted: Thursday, October 20, 2016 3:26 PM
Joined: 1/22/2014
Posts: 573


Mimi,

I wonder why they are waiting so long myself.  DH had a neuropsych test last year and scored poorly in a few areas (like 3%, 5% and 10%).  The neuro wants a repeat neuropsych test in the next few months and said if he shows a decline then she would start the meds.  DH has continued to have TIA's and his cognitive issues have not improved. 

I had to push for 2 years for the neuropsych tests and now I started pushing on meds this year.  Hoping it does not take as long to get those into his treatment plan.


Mimi S.
Posted: Thursday, October 20, 2016 4:05 PM
Joined: 11/29/2011
Posts: 7027


Rosepoint:

I share your frustration. Is this getting to be a trend? Wait for a second neuropsych to make sure the person is really losing?  Meanwhile, the meds that could be slowing down the process aren't being given. Go fight for him!!!

I could understand if this was a case of very, very early stage where loses were just beginning!  But losses of that magnitude. I'd like to hear their reasoning.

 

Those TIAs sound like it's probably vascular and I'll let you educate me on exactly how the symptoms, as opposed to the causes, differ from Alzheimer's.

 What were his best areas of functioning? 


The_Sun_Still_Rises
Posted: Thursday, October 20, 2016 5:04 PM
Joined: 7/24/2015
Posts: 3020


For an actual dx of dementia...one needs have the 2nd neuropsych...otherwise it is just a suspected dx. 

It should not be common practice delay meds.  Meds ARE however delayed until test results show there is an issue...because doctors have justify (with actual medical reasons) why they are giving meds. 

No patient will ever know the behind the scenes issues that doctors may be facing inter-office...what their internal policies are, or just how much they may be being scrutinized. So we have be fair an allow them get their medical justification for.

However, what IS a alarming trend...and it is disastrous us...is that due things like the Alz Asso (and the ilks) marketing in order try raise funds...they propogate the message that Alz is SAD, TERRIBLE, UNTREATABLE...so, in turn, doctors turn the other way...and don't treat...why bother?  It is soooooo radically harmful us...that it really should be made a crime do this.  I am glad that Asso uppity ups get travel all around and have big salaries...but come on, these are people's lives we are talking about! 

So yes, in many ways...the non-treating...and the failure dx IS on the rise...and it will continue this way until we change how we present it in media.  When these orgs can start getting behind the people who actually have it (and start including them in decision making...nothing about us without us)...and supporting our needs live life independently and start rallying publically that there are plenty of years of joyful independent living AFTER dx...(if dx'd and treated early) then doctors will rush start dx'ing us.  But as long as these orgs put money before people...we in for an increasingly growing uphill battle. 

<3


Iris L.
Posted: Thursday, October 20, 2016 7:54 PM
Joined: 12/15/2011
Posts: 18520


Contrary to belief, it is not necessary to have a second neuropsych test to confirm a decline in functioning.  Medication can be begun on the basis of the history and clinical findings.  I believe doctors are reluctant to begin treatment because the response to treatment may not be as dramatic as it is for other diseases.  I was offered medication early, and I noticed a positive response within one week.  My diagnosis was cognitive impairment not otherwise specified.  The trend is for earlier diagnosis and earlier treatment.


I find it disturbing that doctors wait so long.  An analogy would be this:  Women are told to be on the lookout for breast lumps and to get regular mammograms so that if there is breast cancer developing, it will be caught early.  No one says to women, "oh, wait until the small lump has grown and metastasized throughout your body, so that we are certain that is truly is cancer, then we will begin  treatment."  No, no one would dare delay treatment if cancer is the diagnosis or suspected diagnosis.  Why are PWDs not treated with the same mindset?  Why wait until the brain damage has progressed to an advanced stage before beginning medical treatment?  The doctors will say that there is no confirmation that the medications help, but in the advanced stages, the medications don't work as well as in the earlier stages.


Iris L.


TheSteven
Posted: Thursday, October 20, 2016 10:11 PM
Joined: 10/11/2014
Posts: 167


Great news Iris! I don't remember if you ever told us whether or not you ever had those mercury amalgam dental fillings which causes ALZ and lupus as well as 36 other diseases and conditions. If you had them all removed, including those under any crowns, did you ever do a proper detox to remove the mercury?

See

http://amalgam.org/education/scientific-evidenceresearch/results-removal-amalgam-fillings/ or

http://www.fda.gov/ohrms/dockets/dailys/02/Sep02/091602/80027dde.pdf 


Iris L.
Posted: Friday, October 21, 2016 3:37 AM
Joined: 12/15/2011
Posts: 18520


I don't have any mercury fillings and I did not do a mercury detox.


Iris L.


Mimi S.
Posted: Friday, October 21, 2016 8:18 AM
Joined: 11/29/2011
Posts: 7027


Iris I love your analogy. This wait for a repeat neuro psych seems new. Unless the decrease is quite sharp, a year, at least, should elapse between neuros. 

And sorry but with most losses the change can be seen at first exam, especially for the majority of folks today who have working experience. The difference between what you could do a year ago and what you now can do is usually too apparent.  Either you or others have noticed the change and thus the reason for the test. Waiting until you get worse is horrible.


The_Sun_Still_Rises
Posted: Friday, October 21, 2016 10:23 AM
Joined: 7/24/2015
Posts: 3020


To correct any misunderstanding.

MANY doctors will wait until the first neuropsych results for meds.  As this gives them medical justification (to their governing bodies and insurance) for rx'ing them. 

However, it IS true, that a 2nd neuropsych is needed for a TRUE, ACTUAL dx of dementia.  You are free to look up the DSM-5 criteria...but they have clinically establish "decline over time" for the dx. 

Granted, and this is where much of the patient misunderstandings come in, is that doctors will often put down a dx for the sake of coding numbers for insurance companies to approve treatments and medications.  That doesn't mean that the doctor is "officially diagnosing" you with it. 

Even in my case, I had seen doctors for 6 years before I got dx'd...and in that time have had so many different dx's appear on my chart...MS, Lupus, Parkingson's, ALS, Auto-Immune, Lyme, etc....none of which were ACTUAL dx's...but just suspected things in order to get insurance to pay for labs they were ordering or rx's they are trying. 

Doctors can be fairly certain after your first neuropsych  that you have dementia, especially based on your claim that you have been declining...but they would never say it is for sure until the second neuropsych.  They can't...legally.  They have to medically prove you have declined for an ACTUAL dx.

While the PUSH is for earlier dx...while we THINK early diagnosis is helpful.  This is NOT what is happening in doctors offices...especially when it comes to people under 55.  While white married men tend to be treated fairly well in the doctor's office...everyone else still is struggling be dx'd.  All you have do, is read our stories...and talk people with it.  VERY VERY VERY few were magically dx'd right away.  So, no...it is not the trend...sorry.  It is still very much a problem. 

Doctors STILL, unfortunately (because this is what they are being fed by the Assos), view Alz and Dementia as 80+ year olds that are tottering zombies who don't know who they are or who the doctor is.  Any OTHER presentation, especially in a younger person (there is a 20 something year old in the UK dx'd with dementia...imagine their struggle get dx'd), is NOT considered dementia at first. 

6 years ago I was in a neurologists office stating that I was getting confused and tasks were getting harder, like I could no longer drive new places.  He stated, "You talk about vitamins, you are clearly smart, do you see how I have trouble believing you are confused sometimes?"  OMG, what I could have done with Aricept 6 years ago?!  Yeah, no...we are often passed off.  I would LOVE to say it was just me.  But I have met a great many people with Young Onset, and they ALL share the same story of it taking YEARS get dx'd.  So NO, doctors STILL are NOT looking for it or considering it in younger folk...in general. 

The DESIRE however, IS for earlier dx 

And it is not just in Dementia.  In Autism, girls who are more socially aware in general, and are more able to mask their unusual symptoms so much so that girls are RARELY dx'd with Autism...and doctors largely consider Autism a "boy's" disorder.  Even a boy and girl can present with the exact same behaviors...doctors minds will go directly to autism with the boy, but with the girl...it will be considered a "behavioral issue" or a "mental health issue"...and Autism is rarely the first consideration.  This NEEDLESSLY delays and prolongs dx for young girls...and cruely delays early intervention and treatment that could allow them enter school with mainstream peers. 

Same with Chronic Illness...whereas men's complaints are taken far more seriously by doctors...and women often languish for years not getting dx'd. 

There is just a HUGE bias in the medical field.  There just is.  And, YES, it is very harmful to the people who need them not have this bias...as it DELAYS dx and DELAYS treatment. 

And as much as you like picking fights with me...you and I are on the same page in wanting change this in the world. 

Hope that helps clarify. 

<3


alz+
Posted: Friday, October 21, 2016 10:30 AM
Joined: 9/12/2013
Posts: 3608


Iris!  How weird to live under the shadow for so long and then find a new direction...if it happened to me i would be a little shocky.

If you were not part of the community here this would be just another personal experience with trying to find a diagnosis, a cause, a treatment.

Because you are here and share your diagnostic journey,  this benefits us all. your recent travels seem to have been part of your self care, what could be better than finding something you love and energizes you?

My sense has always been there is no clue what is really going on and we just have to find what makes each of us more functional, and it could be so many things, or it could be a choice to eat drink and be merry.

Would you be interested in having chinese medicine practitioner do a diagnostic evaluation and find out what their treatment would be?

After you told about your encounter in China I have been thinking about it, there may be another way to figure out what is out of balance in our bodies and work back from there to western medicine.

Celebrating with you from here, i admit I was afraid you were going to send with "so I'm leaving the boards for a year..." i have learned to tolerate your absences better, i even look forward to your adventures.

love and enjoy!



Mimi S.
Posted: Friday, October 21, 2016 10:46 AM
Joined: 11/29/2011
Posts: 7027


Sun,

On some things we will have to agree to disagree.

When you write: Doctors STILL, unfortunately (because this is what they are being fed by the Assos), view Alz and Dementia as 80+ year olds that are tottering zombies who don't know who they are or who the doctor is....


I don't know if there are any 80 year olds on the Early Stage Advisory Board. Most of the folks on the Board over the years since I have been involved have been Younger Onset. 

When on the board one is available for media interviews. I did a few. It is the media who, when I was on, was perpetuating the attitude you write about. Some were not interested in pursuing an interview when I frankly stated I wanted to portray a different image. Things are changing, although perhaps too slowly for you and many.  Those who are in Early Stage are being publicized. It is just is going to take a long time to change the public's idea of a typical Alzheimer's patient in stages other than final.


It is my belief that the Association is trying to bring a more realistic image to the public mind.  The Association is increasingly working with the medical profession to educate them about Younger Stage and Younger Onset.



Iris L.
Posted: Friday, October 21, 2016 12:52 PM
Joined: 12/15/2011
Posts: 18520


Mimi is absolutely right!  In fact, I have been invited this afternoon to speak with a group of MFCC and LCSW students, who are students who will be entering the counseling professions.  I was invited by the leader of the Memory Club that I just began attending.  He wants me to share my perspective with the students.  


I want to let them know that the image that they and the public have of the PWD as being only the person in late stages needs updating.  There are many of us who are younger and active and interested in becoming pro-active in our own lives.  We are not sitting around waiting for the Grim Reaper.


Mimi, thank you for your post.  I have been searching for a theme for my talk and this is it. "Your image of the PWD needs UPDATING!"


Iris L.


julielarson
Posted: Friday, October 21, 2016 1:18 PM
Joined: 9/30/2015
Posts: 1155


Iris, I am so glad you are speaking for those of us who have Dementia and will shed some light on things for them. People need to know that our lives are not over once the diagnosis is made.. We are still living and loving and are actively living our lives.
The_Sun_Still_Rises
Posted: Friday, October 21, 2016 1:59 PM
Joined: 7/24/2015
Posts: 3020


With all due respect, many of us...(not just those in the "early" stages)...have been speaking up and out and getting out there...sharing the exact SAME message...myself included (I've been on TV a few times now)...as have Michael, Kate Swaffer, Christine Bryden, Howard Glick, Susan Suchan, etc.. etc..  There is a huge long, long list of dementia advocates of people more advanced than you...doing amazing, amazing work. 

Again, this is something that I think and believe WE ARE ON THE SAME PAGE ABOUT...which makes it confusing that you always seem want pick a fight with me...since we essentially agree. 

But the very fact remains...WE all would not be needing speak out...IF THE WORLD WERE ALREADY THERE.  The fact is...the world not there...which is what I said.   

And it is OK...in fact it is JUST FINE...that it is not changing "fast enough" for me (as you put it).  That is just a perspective difference...which we are all entitled have. 

See..."time" is also a matter of perspective.  You just posted that your doctors say you don't have this and don't need the rx for it...and you are not progressing...so you have the "luxury" of "time" that well, frankly, I don't have...as I am progressing (which you seem like hold over my head for some reason)...and, even if it bothers you,  I would actually like accomplish something before I'm dead.  Again, this is just a difference in perspective...both perspectives being equally valid.

What is not-ok...is your continually trying to pick fights on this board.  This board is supposed be a supportive place for people with Young Onset. 


Mimi S.
Posted: Friday, October 21, 2016 2:03 PM
Joined: 11/29/2011
Posts: 7027


Iris,

Have fun.

You'll knock them out!!!!


Iris L.
Posted: Friday, October 21, 2016 6:57 PM
Joined: 12/15/2011
Posts: 18520


I just returned from speaking at the workshop for counseling clinicians.  I discovered that all but one are actually working already in the counseling fields and they are taking this workshop on working with the older adult.  I presented my information and they were all receptive.  


I don't want to belabor the point, but making a diagnosis of dementia is a clinical diagnosis, based on the patient's history, physical evaluation, laboratory findings, imaging studies, and neurocognitive findings.  There should be a demonstration of decline in function over time.  This decline may be documented by the patient's history.  For a long time I worked as a licensed physician and I know what goes into making a diagnosis.


Iris L.




The_Sun_Still_Rises
Posted: Saturday, October 22, 2016 6:14 AM
Joined: 7/24/2015
Posts: 3020


The neuropsych is necessary for diagnosis, because it rules out "mimic" causes of dementia...like depression.  It screens for a very specific pattern of decline that is dementia...and NOT caused by other means...and is the gold standard for diagnosis.   

Dementia is no longer a purely clinical diagnosis. 

The other tests...the blood test, the MRI, and the spinal...are also necessary to rule out other causes that can mimic dementia...that are in many cases treatable, fixable, and reversible....and a dementia diagnosis can only occur when these things have been ruled out.

And, Dementia...as a rule, is both progressive and fatal. 

So while I get that you have a vested interest in hanging onto a clinical diagnosis you got long ago...while you have since medically ruled it out (per this thread/post) and are not-progressing suggesting your decline is something other-than actual dementia or Alz related...(no one is questioning your desire to hang onto it)...rather the point is that it is actually HARMFUL TO OTHERS to belabor it.  In other words, it is not ok to suggest that others do not need all these tests in order to ensure that what they have IS in fact dementia and not in fact something else that can be treated, stopped, and even reversed.  Indeed, no 40 or 50 year olds should stop work and throw in the towel on their lives based on a purely clinical diagnosis that is absent medical signs and is grounded solely on patient report of symptoms or that is based only on the Mini Mental 10 question exam doctors do in the office (which is in fact just a screening test to see if further assessment is warranted).  Indeed, none of the people who have posted in the Young Onset section have suggested they are even comfortable with that...and instead want answers and want to be really sure...you would best serve them, by telling them the full range of tests that ARE actually needed for a true diagnosis. 

The Only part of a dementia diagnosis that is "clinical"...and even then it is only clinical if it is absent any medical signs...is the KIND of dementia it is...so like Alz, or FTD, or Lewy Bodies...which is, in fact, often based purely on doctor bias and patient report. 

I applaud you in helping them realize that younger people can have it (when in fact their image was of older people).

<3


Iris L.
Posted: Saturday, October 22, 2016 2:01 PM
Joined: 12/15/2011
Posts: 18520


At the request of the Moderators and some board members, and in order to protect myself, I will not respond to attacks against me.  I have been a contributing member since 2009, but I began to be personally attacked in August 2014 .  I have learned on this board that some PWDs do attack and become obsessed.  Although it is very disturbing to me,  the advice I have learned on these boards is to ignore the attacks and to disengage.  So that is what I am going to do.  


Iris L.


Mimi S.
Posted: Sunday, October 23, 2016 9:09 AM
Joined: 11/29/2011
Posts: 7027


Iris and I have been preaching for years about the importance of all those tests. Both of us have often recommended Doraiswamy and Gwyther's, The Alzheimer's Action Plan for a fuller explanation.

 

 What I assume is true from the current guidelines is the necessity of two tests by a qualified tester to prove there is actually decline.  Those guidelines have had to be amended in the past and this particular one may need to be modified.

 

 What we both are having problems with is the necessity of having two tests.  For example: If I have the equivalent of a PhD and the tests show major deficiences. What is the possibility that I would have gotten the job, much less kept it with those low scores. Obviously something has happened and other tests are negative for other factors.  What we want is to get the person onto meds so that the proven result of slowing decline can begin.

 

 I was tested at the normal post retirement age. I fully comprehend the frustration of trying to be diagnosed in the earliest stages, especially if one is below the normal retirement age. I was even seeing a neurologist and had difficulty convincing her that I was really experiencing a problem.  I seemed and acted so normal!!!


llee08032
Posted: Sunday, October 23, 2016 9:52 AM
Joined: 5/20/2014
Posts: 4408


Iris,

 I just want to be happy about your good news! 

When I had my 2nd neuro psych the psychologist spoke about the consistency of the scores in relation to the areas of impairment vs speaking about progression. Dx didn't change except for areas of impairment that are consistent with LBD. The tests were only a year apart. Now they want neuro psych # 3 this year which I'm not in a hurry to run out and get. I have to wonder is this going to be another your scores areas of impairment are consistent? I already know this each day that I live with the impact of how I'm impaired BTW. 

I saw the neurologist the other day. I have it memorized how many quarters are in a $1.75? I drew the clock, remembered the 3 words but could only get to 93 with the serial 7's.  Not so bad I'm thinking. For me, I don't see the point of a 3rd neuro psych eval at this time. I told the neurologist I may get the test done in 2017. I am not aware of any decline at this time other than issues with my vision. Just had 2 days of feeling like a coat of vaseline was over my eyes and everything was fuzzy. Today my eye's feel normal. I think I was extra tired and took a few naps. I can't tolerate the medications so that doesn't factor in to my decision to not get neuro pysch eval # 3 at this time. Am I wrong to think this way? Could there be decline and I'm not aware of it? 

If I were to have another test I want something different than I've already had.

Anyway's this thread should stick to being positive and about Iris's good news. 

James Thompson
Posted: Friday, October 28, 2016 3:08 AM
Joined: 1/7/2014
Posts: 2


Actually it would seem that the test does tell us something.  The presence of the Plaques along with memory problems outside the norm for your age is how Alzheimer's is diagnosed.  6 other members of my family had Alzheimer's, 2 of them had autopsy's that confirmed the diagnoses.  I myself have Plaques and memory problems and was diagnosed with Alzheimer's almost 4 years ago at the age of 54.  This result of the Plaques is how I got in a clinical trial for Alzheimer's 3 years ago and I am currently in another Alzheimer's clinical trial right now.  I attended a conference on Alzheimer's in Cambridge, Massachusets and Dayton,