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Alzheimer's ?
Jshu43
Posted: Saturday, June 15, 2013 8:57 AM
Joined: 4/4/2013
Posts: 42


I am 61 years old. My mother has Alzheimer's and I have had memory, cognitive problems for quite some time. About 15 years ago I was diagnosed with Organic Brain Syndrome. That was in conjunction with other health problems - Chronic Fatigue Syndrome and Lyme's Disease. 

I recently had a cognitive functioning test which gave me the diagnosis of Presenile dementia with depressive features. I'm trying to figure out what that means. 

I also had a test for depression which was normal. I think there were questions regarding activities and enjoyment of life that my health necessitated answers that might otherwise be depressive related. 

Does this diagnosis foreshadow an early Alzheimer's diagnosis?


Myriam
Posted: Saturday, June 15, 2013 12:13 PM
Joined: 12/6/2011
Posts: 3326


Hi, Jshu43!  Here are definitions of presenile dementia from an online medical dictionary: 


 

http://medical-dictionary.thefreedictionary.com/presenile+dementia 


Iris L.
Posted: Saturday, June 15, 2013 1:14 PM
Joined: 12/15/2011
Posts: 18362


Jshu43 wrote:

I am 61 years old. My mother has Alzheimer's and I have had memory, cognitive problems for quite some time. About 15 years ago I was diagnosed with Organic Brain Syndrome. That was in conjunction with other health problems - Chronic Fatigue Syndrome and Lyme's Disease

I recently had a cognitive functioning test which gave me the diagnosis of Presenile dementia with depressive features. I'm trying to figure out what that means. 

I also had a test for depression which was normal. I think there were questions regarding activities and enjoyment of life that my health necessitated answers that might otherwise be depressive related. 

Does this diagnosis foreshadow an early Alzheimer's diagnosis?


Welcome to our online support group, Jshu.  You have found the right place for information and support re: your cognitive issues.

I'm 63 years old now, and I had almost the same story as you.  I was developed severe memory loss twenty-four years ago, was diagnosed as depression/anxiety at first.  After six years of treatment with many antidepressants, the psychiatrist said I wasn't improving and my dx was now chronic fatigue syndrome. 

Later this dx was changed to systemic lupus erythematosus.  Part of that dx included organic brain syndrome, which means that the patient has psychiatric symptoms that could be caused from a medical (organic) condition. 

In 2003 testing showed my dx was cognitive dysfunction with depression.  In 2007 my dx was cognitive impairment nos, not otherwise specified, still with depressive features.  I wasted quite a lot of time and effort with psychiatrist, psychologists and therapists dealing with the supposed "depression", for naught. 

My neurologist asked me to try Exelon patch.  I noticed in a few days that my thinking and speech were better.  I've been on Exelon patch and Namenda for four years now.

My neurologist told me I don't have dementia, because my MRI, SPECT scan and PET scans were all unremarkable.  He believes my cognitive impairment is related to the systemic lupus.  I have other possible cause of cognitive impairment that I didn't mention above, such as hypothyroidism, anti-phospholipid syndrome, and sleep apnea.  That's why he put me in the "not otherwise specified"  category instead of MCI, mild cognitive impairment.

Back to you:  presenile dementia is an archaic term and is not in common use.  Before you accept this diagnosis, you should have a thorough evaluation by a neurologist who regularly diagnoses and treats the dementias.  You have several issues that impact your cognition, and you could have more.  You need to search for any possible causes of memory loss that are TREATABLE.  This will involve a physical exam and blood tests.  The neurologist will send you for imaging studies.

There is quite an overlap of symptoms between dementia and depression.  It is worthwhile to treat depression if this is an issue for you, because in some cases, depression can mimic Alzheimer's disease.  The memory loss may resolve as the depression clears.

If you can get a copy of The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke University, you will learn about the diagnostic process. 

If it turns out that you in fact do have younger onset dementia, there is much you can do.  There is medication that can help your memory and help you function better.  You will need to make plans for your income and for your future care.  You will have time to do all these tasks.

You can always call the Helpline and ask to speak with a Care Consultant for personal attention.  I have found them to be very helpful.

Please keep reading the boards and post often.  Let us know of your progress.  We will all help you.  We support each other.

Iris L.

Jshu43
Posted: Saturday, June 15, 2013 1:53 PM
Joined: 4/4/2013
Posts: 42


Thanks!
Jshu43
Posted: Saturday, June 15, 2013 2:18 PM
Joined: 4/4/2013
Posts: 42


Wow!  Thanks Iris for all the great info. I have thyroid problems and sleep apnea as well. 

I have an appt in September with my mother's Alzheimer's dr who is a top expert in Houston. I should get more info then. 

I really want to jump on this and do what I can. Seeing my mother go through this and the toll it's taken on the family is not something I want to

Put my son and DIL through. 

My financial state is not so hot. I haven't been able to work for 20 years. My mother had helped me until the last year when she basically because of the Alzheimer's  stopped helping me. My stepfather took over the finances and he just had a hard time understanding that I'm not able to work. So I'm living on $200 a month food stamps in the single wide mobile home that my mother had fortunately bought me before she was too ill. I never was approved for Disibility so it's been pretty hard. But, I have great friends and church so that's the essentials in life. 

I won't mention this to anyone until I go and get diagnosis in September. No use scaring people. I will be very concerned for my son if I do get diagnosis for early Alzheimer's. it appears it can be hereditary. 

Well, I can get a new sleep study and get on CPap. I never actually used the one I got 5 years ago. I can take antibiotics for Lyme. (I read a high percentage of Alzheimer's patients had Lyme in their brain on autopsy.). I can take some vitamins. And in the meantime I've got this board which seems to have great info!


katelu
Posted: Friday, May 16, 2014 9:36 AM
Joined: 5/16/2014
Posts: 1


Are you both still here?  You are such good support.  After years of caregiving for my mom, I also developed cognitive problems.  Mom had LBD with aspects of AD and PD.  We were told that her father had AZ, but I have his hospital admission card and it says Chronic Brain Syndrome.  In the past two years, I have consulted two different clinics, just for verification, and received diagnoses of Syndrome: Organic Brain NOS and Syndrome: Cognitive Impairment NOS.  I also have Hereditary Peripheral Neuropathy combined with Tremors, confirmed with a DNA test.

I was still caregiving for Mom in her worst stage when my issues became noticeable.  I didn't feel I could take time to pay attention to my problems then.  I was also working more than full-time at my job as a Project Manager at a major university.  I thought there could be some very good and temporary reasons why my memory, thinking ability, ability to follow through, remember names and even remember projects were so impacting my life.

Mom passed two years ago.  I got plenty of sleep.  The problems didn't go away.  So started the rounds of doctors' appointments.  I've seen mental health counselors, psychiatrists, neurologists, neuropsychs and more.  

I lost my job in a major lay off.  I had been talking with my boss all along about how caregiving and my later concerns bothered me and asking for her to work with me and let me know about anything she observed.  She was one of those people who could never say anything bad about someone and performance reviews were always glowing (which would not help should I need to apply for disability).  Then the whole department was laid off.  Looking for a job was beyond me.  I didn't have the ability to actually work through the steps of applying and interviewing.  My tremors would have me shaking like a leaf, which was not a good impression.  However, I applied for and got approved for Social Security Disability without even needing to appeal.

With SSD and a small pension, I will be able to survive.  But no luxuries and with deductibles and copays what they are, for both doctors' appointments and medications, I am going to have to cut back on medical care.

I'm only 61.  What's so wonderful about living to be 100?


Iris L.
Posted: Friday, May 16, 2014 7:44 PM
Joined: 12/15/2011
Posts: 18362


katelu wrote:

 Organic Brain NOS and Syndrome: Cognitive Impairment NOS.


Welcome, katelu.  I couldn't quite figure out what your diagnosis is.  Did you have a thorough evaluation by a neurologist to rule out mimics of dementia?

You must live your life day to day.  That's all any of us has.

I'm glad you mentioned organic brain syndrome.  That was one of my diagnoses for years, but I had forgotten about it. 

Iris L.


 
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