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Worried I too have dementia - HAVE NOT BEEN DIAGNOSE !
Mimi S.
Posted: Wednesday, May 23, 2012 7:12 PM
Joined: 11/29/2011
Posts: 7029


Hi CCB,

Friday is still many hours away. Please, right now, call the help line: 1-800-272-3900


ccb
Posted: Thursday, May 24, 2012 6:33 AM
Joined: 5/3/2012
Posts: 31


Iris and Mimi, I did call the helpline today......thank you.
Iris L.
Posted: Thursday, May 24, 2012 12:07 PM
Joined: 12/15/2011
Posts: 16616


Good for you, ccb!  The point is, from now on, you are not alone. 

There is always some available for you to "talk" with.  Either in written form on these message boards and in the chat room, and verbally on the Helpline. 

You can talk about dementia and memory loss here.  We understand and won't turn you away.  We are your online support group.

Iris L.

Iris L.
Posted: Wednesday, May 30, 2012 12:54 AM
Joined: 12/15/2011
Posts: 16616


ccb, have you been evaluated for sleep apnea?  I have sleep apnea and use CPAP at night.  It relieved much of my fatigue and lethargy symptoms.

Iris L.

Geegee
Posted: Wednesday, May 30, 2012 9:00 AM
Joined: 11/29/2011
Posts: 514


ccb,  Anxious to hear how you are doing.  How was your doctor appointment?
Lisa428
Posted: Wednesday, May 30, 2012 4:24 PM
Joined: 12/5/2011
Posts: 795


Hi ccb,

 

How are you doing?  Would you please share with us?  We are concerned and want to help.

 

Clonazepam is good for anxiety but NOT good for driving.

 

Time to see MD.

 

Thinking of you.

 

Peace and Hope,

 

Lisa


ccb
Posted: Thursday, May 31, 2012 5:09 PM
Joined: 5/3/2012
Posts: 31


Yes, I have used my CPAP every night since 2005 after being diagnosed.
ccb
Posted: Thursday, May 31, 2012 5:41 PM
Joined: 5/3/2012
Posts: 31


Thanks everyone for you reaching out to me and checking in. Today I have had my last 3 hours of testing and will be going back next Monday for my feedback. My wife will be coming along too. I got extremely tired during the test after maybe one hour. I told the dr. and he said that he was glad I made the comment and he made a note. It felt like I could hardly keep my eyes open, and had a full 9 hrs of good sleep last night.

Can’t remember if I had made an entry that my wife and I finally got to talk about “what if” the results were something more on the serious side. We talked the day after she and my son had gone out to dinner the night before. I did not want to go out that night because I had become irritated about “ whatever”, I really can’t even say what “whatever”  was. 

Anyway my 18 year old son, asked his mom “what is wrong with dad” (that felt like a knife had just been stabbed in my heart when she told me that). 

She explained to him what I am doing and why. My son already knew most, but I think the negativity from his dad prompted the question.

  Then my son told her “ Well I’m thinking the worst, and praying for the best”.

Again, my heart sunk!

 I am extremely happy to get to the point I am going to find out some news on Monday.

I have taken steps to look forward with some success in looking more positive regarding life and daily “stuff” that comes around. Relaxation in my own style I guess and feeling better about being able to make it work somewhat for me.

Thank you all again, I am grateful for my interaction with all of your and leaning from each and ever one of you!


bo_dance
Posted: Friday, June 1, 2012 5:47 PM
Joined: 6/1/2012
Posts: 9


 Its probably too late for this, but I'd advise getting long term care insurance before you get a diagnosis. Fortunately I did, because I saw my father having these problems, and not having insurance we couldn't get him proper care. Taking care of him drove my Mom to a frazzle.

 

Once you have the diagnosis, LTC insurance will be unavailable along with much health insurance.

 

Regards Tom Bodine


ccb
Posted: Friday, June 1, 2012 10:35 PM
Joined: 5/3/2012
Posts: 31


Thanks for your post Tom, others too have told me this. My question, does this pertain to any type of dementia/cognitive diagnoses ? 

I suspect the answer is yes, just not sure thank you again.

ccb


Geegee
Posted: Monday, June 4, 2012 7:44 AM
Joined: 11/29/2011
Posts: 514


cbc, long care insurance is not my specialty.  There are others here with more knowledge that can respond.  I do know that once you have discussed memory issues and have gone through steps for a diagnosis, this is a red flag to insurance companies.  I didn't have it either prior to my diagnosis.  

Someone will be along soon to give more impu!  

Iris L.
Posted: Monday, June 4, 2012 11:23 AM
Joined: 12/15/2011
Posts: 16616


ccb wrote:

. My question, does this pertain to any type of dementia/cognitive diagnoses ? 

I suspect the answer is yes, just not sure


ccb, you might want to re-post your question on the Caregiver board.  There are members there with more experience with LTC insurance.

Iris L.


ccb
Posted: Monday, June 4, 2012 1:01 PM
Joined: 5/3/2012
Posts: 31


Well, I had my dr. appt today, and it seems that nothing is wrong although he did say I did overall good on my testing I had some that tested extremely low. I will get a full written report in about 3 weeks. So with tongue in cheek I’m fairly certain all my problems will vanish after I calm down and see it clearly!

Dr. did say exercise and relaxation should be done, to help (help what), and that if he were to think any medication would help (help what) he would suggest something for ADD (or whatever it is called), but due to my heart issue and blockages he says the benefit  for this medication could be good for my issues (what issues) but could be hard or bad for the heart/arteries !

My thought an  a word:      Okay?


Mimi S.
Posted: Monday, June 4, 2012 2:53 PM
Joined: 11/29/2011
Posts: 7029


Hi CCB, 

This is why I get frustrated. Could you remind me again of the qualifications of the person who tested you.  Look for caps, bold responses. 

 

Well, I had my dr. appt today, and it seems that nothing is wrong although he did say I did overall good on my testing I had some that tested extremely low.

I will get a full written report in about 3 weeks. So with tongue in cheek I’m fairly certain all my problems will vanish after I calm down and see it clearly!

 

HOW CAN YOU BE FINE IF YOU TESTED EXTREMELY LOW ON SOME OF THE SUB-TESTS? 

Dr. did say exercise and relaxation should be done, to help (help what),

 

DOES HE THINK THESE LOW SPOTS ARE FROM BEING TENSE AND LACK OF EXERCISE? 


 

and that if he were to think any medication would help (help what) he would suggest something for ADD (or whatever it is called), 

but due to my heart issue and blockages he says the benefit  for this medication could be good for my issues (what issues) but could be hard or bad for the heart/arteries ! I DON'T KNOW WHAT YOUR HEART ISSUES ARE BUT I AM ON SEVERAL HEART MEDS AND THERE HAS BEEN NO ISSUE WITH ALSO BEING ON ARICEPT.  

 

THERE IS A HUGE DIFFERENCE BETWEEN ADD AND DEMENTIA, ALTHOUGH THE HIGHS AND LOWS CAN CERTAINLY BE AN INDICATION OF A LEARNING DISABILITY? DID YOU HAVE ANY POBL;EMS LEARNING ANY PARTICULAR SUBJECTS AS A CHILD.

My thought an  a word:      Okay?

 

I DO BELIEVE I WOULD ASK FOR A SECOND OPINION. YOU DO NOT NECESSARILY HAVE TO REPEAT THE NEURO. BUT THE TESTS GIVEN AND SCORES, AS WELL AS ANY OTHER BLOOD WORK, SCANS, ETC. WOULD BE SENT TO YOUR CLOSEST (IN CASE THEY WANT TO SEE YOU IN PERSON) RESEARCH OR TEACHING HOSPITAL WITH A DEMENTIA CENTER FOR AN EVALUATION. EWITH THIS I WOULD SEND A LIST OF WHAT YOU'VE BEEN EXPERIENCING IN THE PAST 8 YEARS. 


 

YES, WOULDN'T IT BE WONDERFUL IF RELAXATION COULD MAKE ALL YOUR PROBLEMS DISAPPEAR. BUT, THERE'S JUST TOO MUCH THERE. I WOULD WANT ANOTHER OPINION. 


 


 

AND THANKS SO MUCH FOR WRITING, I'VE BEEN WONDERING. 


 

Iris L.
Posted: Tuesday, June 5, 2012 1:18 AM
Joined: 12/15/2011
Posts: 16616


ccb wrote:

Well, I had my dr. appt today, and it seems that nothing is wrong although he did say I did overall good on my testing I had some that tested extremely low.

     This response is totally inadequate.  I have had doctors tell me nothing was wrong with me, when I had to leave my medical practice because of cognitive issues.  Obviously SOMETHING was wrong!

     In your case you have a history of anxiety and depression on medication.  Did this not show on the testing?

     Did a neuropsychologist do this testing?



I will get a full written report in about 3 weeks. So with tongue in cheek I’m fairly certain all my problems will vanish after I calm down and see it clearly!

        If only it were this easy.

 

Dr. did say exercise and relaxation should be done, to help (help what), and that if he were to think any medication would help (help what) he would suggest something for ADD (or whatever it is called), but due to my heart issue and blockages he says the benefit  for this medication could be good for my issues (what issues) but could be hard or bad for the heart/arteries !


                    Did the neuropsychological testing and your history indicate a diagnosis of adult attention deficit disorder?  Is the doctor making a diagnosis of adult ADD? 

 

My thought an  a word:      Okay?


I think Mimi's idea of evaluation at an Alzheimer's Disease Research Center is good.  Alzheimer's is a serious, terminal illness, and it is best to be sure that you have it or don't have it so you can seek treatment and be prepared.

Iris L.
 


Geegee
Posted: Wednesday, June 6, 2012 8:34 AM
Joined: 11/29/2011
Posts: 514


ccb, Mimi and Iris have answered most of your questions.  I thought I would just give you a "third opinion" just to let you know that I am in agreement with their advice.  


There is not anything fast-tracked about an educated diagnosis.  Patience and perseverance are key here!  Good luck.  We can all empathize with you.




ccb
Posted: Thursday, June 7, 2012 5:52 PM
Joined: 5/3/2012
Posts: 31


Hi all and thanks for you IMPORTANT input as to where to go from here. Really I have had to just sit back and shake my head and recall all of the postings regarding this process.

It has taken more than a few days to want to even look at the site here, and just making myself realize that it is true, that it will take much more time, seeking out again someone that can tell me what is going on.

The day of my results and non-diagnosis of anything left me feeling like I must just be stupid to pay money for hours and hours to here what I heard. The thing that really shook me the worst was what my wife had to say after she witnessed my shock to the “visit” last Monday.

She asked me my thoughts and I said I would seek out others to help me get an idea of what is going on in my head. Her statement to me was…..”I really feel that you just want to have Alzheimer!”

Tell you the truth, that threw me under the bus, and train and then a plane crashed on top of me. It has knocked me down and has made me just trying to forget the whole episode and how it unfolded.

I will stay in touch and will try to answer more of your questions as I can. It is even difficult to read your question then come back to respond to them. I WILL be following up with my old neurologist and a shrink (can’t spell sorry) that my regular doctor told me was the best path to follow. I am having a battery of blood test week after next, and then going to discuss my non-issues with someone else in the medical field, and will continue till I find out why I am acting the way I do, and not being able to function on a normal keel in everyday life and work.  I will be on vacation next week at the gulf coast here in Fl. and look forward to NOT thinking about anything. I will be checking in on line, thanks again,

 


Iris L.
Posted: Thursday, June 7, 2012 10:30 PM
Joined: 12/15/2011
Posts: 16616


ccb, consider yourself fortunate that you don't have a definite diagnosis of dementia at this time.  This means you still have time to make changes in your life. 

Follow up with the diagnoses that you do have, which are anxiety and depression.  You MUST work on stress relief!
 

 

Follow Best Practices! 

 

Keep reading and stay connected. 

I believe dealing with dementia and the possiblity of dementia is one of the most difficult challenges for patients and families because there are not many roadmaps.  The best roadmap is on this site.  Being here is a learning experience for all of us.

Have a good time on the Gulf!  I've never been there.  It looks lovely in photos and in the movies.

Iris L.
 


Myriam
Posted: Friday, June 8, 2012 12:51 AM
Joined: 12/6/2011
Posts: 3326


Have a GREAT time ccb.  We'll still be here if you need to touch base.
ccb
Posted: Monday, June 18, 2012 5:07 PM
Joined: 5/3/2012
Posts: 31


Hello Iris, I did receive  an evaluation in my report of Neuropsychological evaluation that reads:

 

ICD-9 Diagnosis: Diagnosis:  

780.93 Disrupted memory function due to multiple factors

  311 Depressive Disorder NOS


FINDING INPART: 

“ The present pattern does not appear to be consistent with an incipient dementing illness such as DAT.”

 

In the report over all I did with in the average range for my age, education and vocation. Had some areas that were below average, and when the test was evaluated to a higher level I actually did better than average.

 

“Persons with similar cognitive profiles and symptom patters are often helped by medications normally prescribed for ADD” then goes on the say because of other medical issues…..”Such medications are usually contraindicated in patients with CAD or history of TIA due to increased stroke risks, and may not be an option for” me.

 

Also suggest 1-2 years for a repeat neuropsychological evaluation, or sooner with any precipitous fall-off in abilities.

 Testing by: LICENSED CLINICAL PSYCHOLOGIST, NEUROPSYCHOLOGIST

So I have returned from vacation and had a good time and rest, began somewhat consumed by “cabin fever” after 4 days at a beautiful beach here in Fl.

My next appt. is more blood work by family doctor and then making an appointment with a Psychiatrist for the near future.


Iris L.
Posted: Tuesday, June 19, 2012 2:36 AM
Joined: 12/15/2011
Posts: 16616


ccb wrote:

Hello Iris, I did receive  an evaluation in my report of Neuropsychological evaluation that reads:

 

ICD-9 Diagnosis: Diagnosis:   

780.93 Disrupted memory function due to multiple factors 

  311 Depressive Disorder NOS 


 

ccb,  Your doctor may give you the option to begin memory medications.  The memory meds (Exelon patch and Namenda) have been helping me. 


Not all neurologist agree, however, on prescribing memory meds without a more precise diagnosis of AD. 

It is worth investigating on your part.

The depression should be treated assertively as much as possible.  I tried several antidepressants with poor results until my last one, which I have been on for three weeks.

Treatment may make a difference in how you feel and function.

Also, continue Best Practices and consider aromatherapy.

Iris L.

nurse19465
Posted: Wednesday, July 25, 2012 3:28 PM
Joined: 7/25/2012
Posts: 5


Hi, I'm going to try and get into a research study.  I retired as an RN and I do believe they will have a cure soon but I've always believed in research studies, you could get the new medication years before it hits the market.
Iris L.
Posted: Wednesday, July 25, 2012 6:07 PM
Joined: 12/15/2011
Posts: 16616


Welcome to our online support group, nurse.  You seem to have some memory problems according to your profile,  It is necessary for you to have a thorough medical evaluation by a neurologist who specializes in dementia, because there are many medical conditions that cause memory loss. 

Some memory loss may be reversible if caught in time.  Your PCP can begin the evaluation by doing blood tests and a physical exam.  Ask your PCP to a referral to an Alzhmeimer's Disease Research Center.

Please continue to share.  When you do, feel free to begin your own thread by clicking on Add Topic on the main page.  Please come back.  You are not alone.

Iris L.