Home Safety Checklist

ANNOUNCEMENT: ALZConnected will be temporarily unavailable beginning Monday, April 3 at 9:00am CT until Wednesday, April 5. During this time, we will be transitioning ALZConnected to a new platform. Members will be able to access the new platform by the end of day, Wednesday, April 5. Click here to learn more.

RSS Feed Print
Sharon Buck
Posted: Saturday, December 19, 2020 9:22 AM
Joined: 12/19/2020
Posts: 5

I was seen about a year and half ago by a neurologist when I first began noticing mild changes in my cognitive ability.  All I got from him was there were some white spots on my brain and he didn't know what they were. The 2 hours of cognitive testing I never heard a word about. Now these past 6 months have gotten horribly worse. I am scheduled to see a different neurologist. I am 55 and was a nurse, caring specifically for dementia and alzheimerspatients. I know the signs and symptoms. I do look about 40 and have been rushed out of A Drs door before because of it. Was I misdiagnosed because he thought I was too young? Any support will be appreciated.
Posted: Sunday, February 14, 2021 2:46 PM
Joined: 5/12/2017
Posts: 5

I'm sorry there was no reply to your post. I also have a worsening of cognitive difficulties and an MRI scan a few years ago showed more white spots than would be expected for my age. I've had memory tests which I passed with flying colours. I'm now convinced I have dementia and have little faith in what the "experts" tell me. I wish you well.
Iris L.
Posted: Sunday, February 14, 2021 5:52 PM
Joined: 12/15/2011
Posts: 18723

Welcome Sharon.  I'm sorry, I missed your thread also.  Your experience sounds like mine initially.  The first neurologist sent me for a PET scan and said it was unremarkable, so I was all right.  She did not refer me for cognitive testing.  

A year and a half later, I was referred to a neurologist who regularly diagnoses and treats PWDs (persons with dementia.)  He was not impressed at that time with my MRI, which did show non-specific white lesions.  He did refer me to a neuropsychologist for extensive neurocognitive testing.  The neuropsychologist's conclusion was cognitive impairment and depression.  Then, the neurologist began to take me seriously.  

After a trial of antidepressant, which had no effect, he offered me a trial of Exelon patch.  I held it for three months because I was afraid of the implications.  But my safety was at risk, because I kept burning food on the unattended stove.  I knew I had to do something to help myself.  I began to use the patches.  Within a few days, I noticed improvement in my memory and my speech.  At my next visit one month later, I told him I wanted to continue and he prescribed the higher, therapeutic dosage that I have been on ever since.

Some time later he told me that the white spots on the MRI are now called leucoairaiosis, having to do with changes in the blood vessels of the brain.  You can read more about this.  I also have hypertension, under treatment.  Elevated blood pressure can affect cognition.

My neurologist got me enrolled into a clinical trial which offered the Amyvid PET scan.  This scan ruled out amyloid plaques, so he said I do not have Alzheimer's Disease.  My cognitive impairments are due to a combination of medical factors, including systemic lupus, antiphospholipid syndrome, sleep apnea, hypertension and possibly another condition.

I was a pediatrician in my working life.  Anyone of any age with cognitive symptoms should undergo an extensive evaluation.  This is because there are many medical causes of memory and cognitive problems.  Also, many commonly prescribed and OTC medications affect cognition.  A history of chronic or old head trauma can affect cognition.  All of these conditions must be checked and treated or ruled out.  

Extensive neurocognitive testing by a specialist should be undertaken.  It is beneficial to seek out a Memory Clinic at a medical center or Alzheimer's Disease Research Center for specialists to do these evaluations.  

The Alzheimer's Association can help you locate specialists in your locality.   This is a free service.  Call the Helpline and ask the volunteer who answers to let you speak with a Care Consultant.  One is available 24 hours a day.  The Care Consultant is a social worker with special expertise in issues affecting PWDs.

Sharon, I hope I have given you some encouragement.  Have you had your second opinion appointment yet?  Please write and let us know what is happening and how you are doing.  You say you were a nurse, so does that mean you are not working now?  Take care! 


× Close Menu