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Uninformed PC Dr.
Willow
Posted: Friday, February 3, 2012 9:36 AM
Joined: 1/20/2012
Posts: 43


It's amazing that some people even seek treatment at all if they experience what I did. I finally decided it was time to take responsibility for my condition and get whatever help I need so I set up an appt with my PC Doc to test for Alz.

Now first of all I found out the appt was only for 20 minutes so that was warning sign 1. Then he came in and started asking me questions that are for people who are in the later stages as in, 'how did you get here today?', do you get lost when driving?' and assorted questions for that stage. Then he told me I don't have Alz and offered no other help.

I had to tell him I disagreed with him and he finally relented and agreed to send me to the memory clinic. I was depressed for days because he didn't seem to believe I had a problem and asked if I'd ever seen a pychiatrist (sp). I thought of waiting another year so I would be worse before pursuing this and after a week I got back on track with feeling that early detection is best.

The thing is that I was trying to take responsibility for my health and seek treatment before it gets worse. I know it's the early stage right now but from reading this site that seems to be key in getting the med early. Meanwhile my sister told me to start documenting when my brain is disconnected.

I do have an appt with a counselor and am looking forward to her referring me to a different Dr. and support services. I've seen her when I was caring for my MIL and she is an angel.


younghope
Posted: Friday, February 3, 2012 10:34 AM
Joined: 1/9/2012
Posts: 27


Willow, you need to see a Neurologist as dementia is their specialty. PC have little if any experience with dementia, especially EOAD. And the mini mental exam he gave you is far out dated, it isn't for people with EO.

Tracy


Iris L.
Posted: Friday, February 3, 2012 12:15 PM
Joined: 12/15/2011
Posts: 18219


Willow, remember, most PCPs are CLUELESS about EOAD and how to evaluate memory problems at all.  I had five hour neuropsychological testing and gave the report, which stated imparied executive functions and cognitive impairment nos, to my treating psychologist.   

 

Several months later, after I had been on medication for several months, she gave me a mini-mental status test on which I had no deficits.  She waved her hand and said, "I see no evidence of memory problems here!"  So ever since then she has refused to discuss my concerns about my memory loss with me.   

 

Be prepared to be disappointed over and over again.  You will find that more doctors are clueless than educated about EOAD.  Sometimes it's best to just move on to the next person. 

 

Iris L. 


Mimi S.
Posted: Friday, February 3, 2012 7:08 PM
Joined: 11/29/2011
Posts: 7027


Willow, What he was giving you was the 5 minute mini-mental test. Did you complete it?

Were any parts hard for you?

If it makes you feel any better, I was going to a neurologist, complaining of memory problems and it took her a few years to finally hear me.

I'm glad you were smarter.

From your library, please request:The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ. You will learn what a good diagnosis consists of.

Do stay with us. 


Willow
Posted: Saturday, February 4, 2012 5:50 AM
Joined: 1/20/2012
Posts: 43


I'm reading so much on the posts about people having to go through several years before getting an accurate testing. It made me feel like I should wait until there's absolutely no doubt but then I read about the importance of early testing to catch it early. I think the worse thing would actually being told that nothing's wrong when I see myself slipping away.

The wierd thing is that I'm the 'health nut' in my family and have been putting the Best Practices as part of my whole adult life even before coming to this site. It's just all so strange. Yet I'm the one who has whatever I have.

The other day I put beans on the stove to come to a boil then went upstairs and forgot until I smelled a burnt kind of smell and ran down. There was a mess on the stove for sure. This has taught me to not leave the room until anything has come to a boil and been turned down. Common sense really and not a big unusual thing in telling anyone but just one more lilttle thing that adds up to a big picture.


SteveSanJose
Posted: Saturday, February 4, 2012 1:21 PM
Joined: 1/3/2012
Posts: 189


 Willow - Some doctors who are just family doctors, are really not in tune with Alzheimer's. The type of insurance you have, also hinders the diagnosis of Alzheimer's, especially if you are under 65, where Alzheimer's is more rare. A numerologist, psychiatrist, or genealogy specialists are best. You could see a psychiatrist, at a local nonprofit organization, without a referral. Do you do luxury, with your insurance, of changing doctors? Living in a small city is also more difficult for person with any disability, due to less services. That's why I moved to San Jose, of big-city, from a smaller near by city.

Nurse 

I copyed this from a reply from your irtited post, as the two post are alike. Back to top 


frustrated047
Posted: Saturday, February 4, 2012 2:35 PM
Joined: 12/18/2011
Posts: 36


Willow wrote:

 I think the worse thing would actually being told that nothing's wrong when I see myself slipping away.

The wierd thing is that I'm the 'health nut' in my family and have been putting the Best Practices as part of my whole adult life even before coming to this site. It's just all so strange. Yet I'm the one who has whatever I have.

The other day I put beans on the stove to come to a boil then went upstairs and forgot until I smelled a burnt kind of smell and ran down. There was a mess on the stove for sure. This has taught me to not leave the room until anything has come to a boil and been turned down. Common sense really and not a big unusual thing in telling anyone but just one more lilttle thing that adds up to a big picture.


Hi Willow,  I feel for what you are going through.  I can really relate to your statement of seeing yourself slip away.  I too have on several occasions walked away from food cooking and completely forgetting about it.  It has really scared me, and greatly concerned my husband.  I have been going through all the posts here and mostly sympathize with so many stories.


JAB
Posted: Saturday, February 4, 2012 3:57 PM
Joined: 11/30/2011
Posts: 740


Hi, Willow.  It's appalling, how many PCPs don't have a clue when it comes to dementia.

 

Taking responsibility for your health and seeking treatment before your problems get worse was absolutely the right thing to do, and don't let that idiot upset you.

 

It was the right thing to do because there are many, many, many disorders that can cause dementia-like symptoms, and most of them are readily treated.  So the sooner you get going on finding out what's wrong, the better off you'll be.

 

Often, the best place to look for a qualified doctor (or team of doctors) is a so-called "memory disorder clinic." There's a partial list at:
http://www.alzcompend.info/?p=14
If your state isn't on the list and you don't mind telling us the general vicinity where you live, we may be able to help you track down a center near your home.


Iris L.
Posted: Saturday, February 4, 2012 9:47 PM
Joined: 12/15/2011
Posts: 18219


Willow wrote:

The other day I put beans on the stove to come to a boil then went upstairs and forgot until I smelled a burnt kind of smell and ran down. There was a mess on the stove for sure. This has taught me to not leave the room until anything has come to a boil and been turned down.

 

 

 

 

 

Dear Willow,  This is a DANGER SIGN!  This happened to me and a couple of wonderful caregiver members advised me to avoid the stove.  That was good advice for me.  My memory of the stove was about 10 seconds.  Until you know what you are dealing with, I would advise you to NEVER walk away from a pot on the stove, even if the flame is turned down.  You can still completely forget and burn your food and pots, and possibly start a kitchen fire.  It is safer to stand by the stove or turn the flame off if you need to leave the kitchen. 

 

Now that I am on Exelon patch and Namenda my short term memory has lengthened.  I can use the stove again.  I stay right by the stove while I am cooking.  I set timers for every five minutes to remind myself to check.  I don't go farther than the living room without turning the flame off.  I don't want to take any chances.

 

 

P .S.  Do you have a working smoke alarm?

 

Iris L. 



Geegee
Posted: Sunday, February 5, 2012 11:28 AM
Joined: 11/29/2011
Posts: 514


Willow, it's obvious your PC was insensitive...and ignorant about EOAD!  We have all encountered physicians that are just not informed.  When a patient has 


a concern about their memory, it's the doctors responsibility to look into the many possibilities that could be causing your memory issues.

  ( thyroid, B-12 deficiency, depression, to name a few).  


After I had a few doctors say, "it's just a part of getting older," I had one that listened and referred me to a neurologist who listened. 


 From that point on, I began eliminating any of my current "medical team" that did not accept my diagnosis of AD.  Some doctors question the accuracy of the 


dx!  Sadly, I had to educate them about EOAD.  In short, most people you meet will not understand EOAD. 


 Educate the ones that are important to you and eliminate those that don't want to be understanding.


Willow, I'm glad you have your next appt. with a dr. that you know is understanding.  Talk to her.  Then begin to build your "team" who will be supportive or your medical needs.


JAB directed you to a local memory clinic.  Most of the ones associated with a major university or hospital are excellent.  I work with one in my area.


Wishing you the best.  Just take a deep breath and keep going for an answer.  



SteveSanJose
Posted: Sunday, February 5, 2012 12:09 PM
Joined: 1/3/2012
Posts: 189


This is the memory clinic I go to, thay are in Northern and Southern Califonia. Not on the list. Thay are good. Services - http://www.usmemoryclinics.com/services.html 

Locations - http://www.usmemoryclinics.com/about.html 


memory
Posted: Sunday, February 5, 2012 12:22 PM
Joined: 2/5/2012
Posts: 4


I went to my Neurologist and told him that I thought that I had Alzheimer's. There are three tests for diagnosis.

1. Questions in the doctor's office, like you had.

2. I then had a blood work for Alzheimer's done.

3. I had an MRI for short-term memory loss.

All three were positive. I was diagnosed. 

Ask for the other two tests.

I hope you find another good doctor.


Willow
Posted: Monday, February 6, 2012 9:18 AM
Joined: 1/20/2012
Posts: 43


Do you do luxury, with your insurance, of changing doctors?

Hi Steve, Since I've never heard of this expression I'd say I don't have it. I do live in a small town and am at the beginning stage of finding support programs.

I have to say I love this site!!! I  feel so much better just logging in and seeing what other people are going through and offering encouragement if I'm able to. And the support I  receive when I'm down just brightens my day!

You are all so wonderful!!!   


Willow
Posted: Monday, February 6, 2012 9:25 AM
Joined: 1/20/2012
Posts: 43


Iris wrote: P .S.  Do you have a working smoke alarm? 

 

Yes I do Iris and I like your advice of setting the timer. Yesterday I stayed in the kitchen while something was cooking and set the timer for every 5 minutes so I could check it. I just stayed in there and read and in 15 minutes it was done.

You're a genius!!!   


Willow
Posted: Monday, February 6, 2012 9:33 AM
Joined: 1/20/2012
Posts: 43


JAB wrote: Often, the best place to look for a qualified doctor (or team of doctors) is a so-called "memory disorder clinic." There's a partial list at:
http://www.alzcompend.info/?p=14
If your state isn't on the list and you don't mind telling us the general vicinity where you live, we may be able to help you track down a center near your home.

Hi JAB, I went to the site and don't see the one I'm going to. I live in Vermont and I'll be going to Burlington which has a good hospital and university so I think I'll be in good hands there. It is known as a memory disorder clinic in this area.

I'll see how it goes and maybe it should be added to that list. First I'll see how it goes though.

Many thanks for your help!  


SteveSanJose
Posted: Wednesday, February 8, 2012 11:28 AM
Joined: 1/3/2012
Posts: 189


I can change doctors any time, with my Medi-Care, and Medi-Gap insurence.  I also live in a big city, just under 1 million people, where there are a lot doctors and services avalable. I moved from a small city for just this reason. I'm a county boy a heart.

custom smiley


Mimi S.
Posted: Thursday, February 9, 2012 1:34 PM
Joined: 11/29/2011
Posts: 7027


Wow. something weird just happened. I was typing an answer, hit the command i button to italisize and an e-mail addressed to some company I never heard of popped up.

Meanwhile my post was gone.
And I was suggesting that those interested in what a good testing for dementia should consist of please read : The Altzeimer's Action Plan  by Doraiswamy and Gwyther of Duke Univ.
There have been blood tests studied that will ID AD, but none are in use that I'm aware of. The blood tests given are to eliminate other common causes of dementia symptoms.
Also needed is a neuro-psychialical test, lasting several hours and usually set up with appointments over several days. 
A doctor who diagnoses Altzheimer's on the basis of a five minute mini-mental test should be ashamed. That is only a screening tool. Further tests are needed. Some people with certain kinds of dementia can pass that test with flying colors and still have dementia.

dutiful deb
Posted: Sunday, February 12, 2012 6:37 PM
Joined: 1/1/2012
Posts: 1907


I am so glad I stumbled on this....I'm actually the daughter of a patient. My mom was initially given that little test and of course passed it. At the time I didn't think it was an accurate test for her. Just because she could tell who the president was and spell "world' backward (which a lot of non-dementia patients can't do!) doesn't mean she's okay. She was doing a lot of things that raised a red flag, and it had nothing to do with her spelling ability. I know, this was a congitive skills test,  but I felt it was not helpful at the time.  It wasn't until she switched doctors that she got the help she needed. Now at this point, a cognitive skills test may help pinpoint where she's at, because if she can't read or understand the instructions on a pill bottle, that's a definite problem.  I wish there were more awareness of this, and that the test for early detection could be improved.

Thanks for letting me but in...deb.


Mimi S.
Posted: Sunday, February 12, 2012 7:26 PM
Joined: 11/29/2011
Posts: 7027


Hi Deb,

Too mush reliance is sometimes put on that mini-mental test when a person passes. One of the main reasons is that the person might have a dementia other than AD in which memory is not the main failure.

 

I wish someone had asked me after I passed the first time how I felt. I knew I had struggled. The drawing test was incorrectly passed. I knew I could not draw it free hand. So it was probably three more years before I tried again and quickly failed.

As it was, I was still very lucky since the disease was still caught at it's very earliest stages.

 

We are nearing the time when biomarkers will be the main way the disease is identified. Right now, I don't know if these are mainly good at detecting AD, or if they are equally good at detecting the rest of the dementias. Anyone know?


Iris L.
Posted: Monday, February 13, 2012 2:24 AM
Joined: 12/15/2011
Posts: 18219


dutiful deb, the MMSE (Mini Mental Status Exam) is designed to be a screening test to alert the doctor of the need for further evaluation.  It should not be used for ongoing progress reports, although many doctors do use it as such.  Here is what the Alzheimer's Association says about the MMSE:

 

"Mental status tests

Mental status testing evaluates memory, ability to solve simple problems and other thinking skills. Such tests give an overall sense of whether a person:

  • Is aware of symptoms
  • Knows the date, time, and where he or she is
  • Can remember a short list of words, follow instructions and do simple calculations

The mini-mental state exam and the mini-cog test are two commonly used tests.

Mini-mental state exam (MMSE)
During the MMSE, a health professional asks a patient a series of questions designed to test a range of everyday mental skills.   

The maximum MMSE score is 30 points. A score of 20 to 24 suggests mild dementia, 13 to 20 suggests moderate dementia, and less than 12 indicates severe dementia. On average, the MMSE score of a person with Alzheimer's declines about two to four points each year.

Mini-cog
During the mini-cog, a person is asked to complete two tasks:

  1. Remember and a few minutes later repeat the names of three common objects
  2. Draw a face of a clock showing all 12 numbers in the right places and a time specified by the examiner

The results of this brief test can help a physician determine if further evaluation is needed"

 

 

 

 

Mood Assessment
In addition to assessing mental status, the doctor will evaluate a person's sense of well-being to detect depression or other mood disorders that can cause memory problems, loss of interest in life, and other symptoms that can overlap with dementia"

 

 

 

 

A comprehensive neuropsychologic set of tests takes five to six hours and involved detailed evaluation of the patient's performance and comparing results to other patients of the same educational, socioeconomic and age level. 

  

These tests are used in conjunction with a detailed history and physical exam, blood and other laboratory tests, and imaging studies.   

  

Then a working diagnosis  can be made, with the proviso that over time the diagnosis may be changed as new symptoms appear. 

 

 

We're glad you visited us, deb.  Please come back often.  Questions are welcome! 


 
 

 Iris L. 

  


John891
Posted: Monday, February 13, 2012 5:45 PM

Unfortunately Willow,


Most doctors from my experience will write you off if you complain about memory problems.  I'm glad my PCP and neurologist took me seriously.  My neurologist did say I was quite young but still had me take some tests.  It turned out to be low testosterone.  Anti-depressants messed me up.  I went to the urologist who didn't do anything.  When I said I was sent there because of memory problems and needed help with my testosterone levels, he cynically said,  "You have excellent memory"  I said you don't know what I go through everyday.  "He said, "Well, everyone has memory problems"  My neurologist even wrote him a letter about my memory issues/low testosterone.  He acted like he knew about this more than my neurologist.  So just about any doctor in any speciality is clueless about memory issues, dementia or AD. 

 

John


 
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