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Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

Caregivers: Dementia | Last Active: Oct 25 4:13pm | Replies (45)
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@laughsloudly

Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I am 46. He doesn’t have a diagnosis yet - still doing testing. It’s strange because some of it points to EOAD (hypometabolism in parietal and temporal lines and precuneus; memory loss, trouble with executive functioning, abnormally low abeta42, unable to work as an attorney), but then other things don’t point to EOAD (no amyloid plaques, normal ptau/abeta42 ratio), so it’s strange. Definitely impacting our day-to-day life though. My husband is seeing Dr. Taner.

What is your situation?

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Replies to "Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I..."
maryvc | @maryvc | Jun 30 7:25am

I am so sorry to hear you are going through this at such a young age. It sounds like you are doing everything to find the diagnosis and I know this is difficult.
Dementia is a mysterious disease and not all is Alzheimers. It would be helpful for more people to do what you are doing even though it is so hard.

My husband is older-now 77 with MCI but I am wondering if it would do us any good to pursue more diagnostic testing. All he has had is an MRI and meetings with the neuropsychologist and geriatrician. I asked his PCP to order a PET scan. He was no help when I asked about looking at APOE-the PCP ordered a lipoprotein A test instead.

I have thought of further eval at a Mayo Clinic, but at our age what will we accomplish?

Thank you for sharing. I hope you find support here.

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gail60 | @gail60 | Oct 22 9:36am

Hi, How did it go with Mayo? I have no idea why it took me so long to see this message. We are 4 years into the disease process and beginning the severe stage. It's been a cruel and heartbreaking journey. We saw Dr. Graff-Radford and in a nutshell, he said, there was nothing he could do and to go live for today.
Getting the correct diagnosis is often difficult and drawn out. I hope you have some answers by now.

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