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I no longer have Alzhiemers
Grandpa Brian
Posted: Tuesday, February 18, 2020 6:56 AM
Joined: 12/10/2019
Posts: 39


My Amyloid PET Scan showed no Beta Amyloids, so I do not have Alzheimer's.

  But now the search for answers begins again!  Frustrating!


Michael Ellenbogen
Posted: Tuesday, February 18, 2020 7:23 AM
Joined: 11/30/2011
Posts: 3053


Good luck as i have gone down that road. Yet I still have a top doctor insist I do. He feels that they just don’t know enough yet to totally rule that out. Especially since we do not know how all of these things play together. I got to appoint that I just don’t care anymore but you are in a different place because you need some diagnoses so you can leave the work force with pay. I do hope they are right for you so you don’t have to go down in the slow sinking boat. 


Grandpa Brian
Posted: Tuesday, February 18, 2020 7:44 AM
Joined: 12/10/2019
Posts: 39


Thanks! yes, it is very frustrating on both situations diagnosis and work.
looking4relief
Posted: Tuesday, February 18, 2020 11:56 AM
Joined: 11/27/2019
Posts: 56


I am relieved for you that you don't have Alzheimer. Lets hope for something lighter.
looking4relief
Posted: Tuesday, February 18, 2020 12:05 PM
Joined: 11/27/2019
Posts: 56


My grandmother's decline is slow right now. Although she always says a person didn't visit her even when that person came by the same morning, she seems to have an idea about if someone visits her frequently or not. I spent about a month and a half without visiting and when I saw her yesterday she told me something like 'it's been so long, I thought about you and I thought I would never see you again'. I'm wondering if she really thought about  me it sounded sincere. It was troubling cause I was thinking the same thing. She doesn't know my name anymore but she has this vague idea that I'm someone who used to visit often I think.
Iris L.
Posted: Tuesday, February 18, 2020 9:37 PM
Joined: 12/15/2011
Posts: 16409


Did you have an Amyvid PET scan, Brian?  My results showed the same, no amyloid, thus no diagnosis of Alzheimer's Disease.  I believe my cognitive issues stem from cardiovascular pathology.  Read about leucoairiosis.  That's what my MRI showed.  


I still deal with memory loss and impaired executive functions.  I still follow Best Practices and am following the suggestions of my role model peers and my virtual care partners.

Iris


Grandpa Brian
Posted: Wednesday, February 19, 2020 6:31 AM
Joined: 12/10/2019
Posts: 39


thanks, I will check it out.
Iris L.
Posted: Wednesday, February 19, 2020 11:44 AM
Joined: 12/15/2011
Posts: 16409


Brian, if I didn't already mention it, have you had an overnight sleep study in a hospital sleep lab to look for sleep apnea?  People can have sleep apnea without snoring.  Sleep apnea can cause oxygen deprivation in the brain with subsequent memory loss and cognitive changes.


Iris


Grandpa Brian
Posted: Wednesday, February 19, 2020 1:32 PM
Joined: 12/10/2019
Posts: 39


Good thought, but I have had a C-Pap machine for 3 years, big differences
Grandpa Brian
Posted: Thursday, February 27, 2020 9:30 AM
Joined: 12/10/2019
Posts: 39


Good morning all!

All my test MRI, two different PET scan, Spinal, and blood work show no signs any degenerative diseases, yet my situation continues to get worse. Going to do another 4 hour cognitive study with a specialist to search for answers.  I think some else here had something like this.  any thoughts?


Michael Ellenbogen
Posted: Thursday, February 27, 2020 9:32 AM
Joined: 11/30/2011
Posts: 3053


Are you seeing top doctors in the field? 


Grandpa Brian
Posted: Thursday, February 27, 2020 9:53 AM
Joined: 12/10/2019
Posts: 39


I believe so, My normal neurologist specializes in weird cases and teaches at IU Med Center. I am also seen by the head of the LEADS study which is a multiple state study. They and there teams focused on different diseases and extra looks at the scans. I feel very confident they  thoroughly investigated my information.
Iris L.
Posted: Thursday, February 27, 2020 11:48 AM
Joined: 12/15/2011
Posts: 16409


Brian, I have many of the symptoms of Alzheimer's Disease: short term and long term memory loss, impaired executive functions, difficulties with speech, reading, mathematics, and learning new material.  I don't have spatial problems or anosognosia.  My symptoms are progressing, albeit slowly.  My diagnosis falls under the "not otherwise specified" category.  This means the symptoms are due to a condition that is not one of the most common etiologies of dementia.  My specialists attribute my symptoms to complications of systemic lupus, an autoimmine disease.  Do you have an autoimmune disease?  


You seem to be working with a good team.  You may never get a specific diagnosis.  I have learned that most of the advice proposed for a PWD with Alzheimer's Disease can apply to me.  Basically, aim to slow the progression, manage my environment and get my financial and legal affairs in order.  Developing a philosophy is guiding me to stay focused, because it is so easy to get waylaid.  


Iris


Grandpa Brian
Posted: Thursday, February 27, 2020 12:52 PM
Joined: 12/10/2019
Posts: 39


Thanks! Work is my big east struggle.  We have disability insurance, but now with no diagnose, it will be hard to apply for when I have to stop. I have a good situation here a work, but I can see the end is probably sometime this year.
Iris L.
Posted: Thursday, February 27, 2020 4:05 PM
Joined: 12/15/2011
Posts: 16409


There is a government sponsored website that talks about work accommodations.  I'll have to look for that site and get back to you.  You can request some accommodations from your employer without revealing your disability.  


In the meantime, you might want to review your annual job performance review, to see if you have any warnings of poor performance.

 

Addendum: Go to www.askjan.org and search for cognitive impairment" and "Alzheimer's".  This is the Job Accommodation Network.  You might want to seek an employment lawyer for specific advice.

Iris


Iris L.
Posted: Friday, February 28, 2020 5:40 PM
Joined: 12/15/2011
Posts: 16409


Despite all of the above, I still have the capability to enjoy my life.  I have learned so much from my peers and my virtual care partners.  My life is different than before.  I definitely have to be pro-active.

Iris


RIM
Posted: Monday, March 9, 2020 1:41 PM
Joined: 5/22/2019
Posts: 39


My father, at 92, experienced sudden memory loss, confusion, hallucinations.  Four doctors told me his sudden decline was a result of dementia.  I didn't know anything about dementia at the time, but felt something else was the cause.  I happened to watch him sleep at 4:30 AM and saw him waking up every 4 to 5 minutes, then saw him GASPING for air.  Right then I knew the sleep disturbance was cause and effect of the mental decline.  He was tested for sleep apnea and dx with severe apnea.  Even with the severe sleep apnea, two of his doctors dx him with combination  sleep apnea\alzshiemer's.  Three months with sleep therapy, he scored 8 points higher on the MMSE and the dx was changed to MCI.    He still has some short term memory loss, but is over all very good.  

Although my father is elderly, he is a perfect example of misdiagnosed dementia.  If it wasn't for me looking for answers, they'd have put him on Aricept, without searching  for the source of the decline and my father would have been chewed up by the sleep apnea.  

 


Jo C.
Posted: Monday, March 9, 2020 6:00 PM
Joined: 12/9/2011
Posts: 10735


Thank you so much for alerting us to this, RIM.  I wonder if you would be willing to copy your Post to both the Caregivers and Spousal/Partners Forums, it may be very helpful to many.

Thank you again,

J.