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Real members of myHIVteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Do Other Long Termers Have Unexplained Cognitive Decline?

Do Other Long Termers Have Unexplained Cognitive Decline?

I’m having increasing challenges with memory, problem solving, and ability to focus. My doctors find no reason. He doesn’t see H.A.N.D. as a reasonable consideration. I retired last year at 58, primarily because I felt my abilities slipping, which kept me stressed. I have become more and more dependent on my husband to handle personal business, navigating airports, using apps, finding misplaced items and more. I’ve been positive over 30 years, but otherwise healthy. Are others experiencing… read more

A myHIVteam Member said:

Definitely. I experience all the same things as you. Whether it be having the virus long term, years of taking toxic meds, and age I think all contribute. I have failed several memory tests. Short and long term. Oddly enough, upon orders from my oncologist for an MRI with dye of the brain, the results showed some brain atrophy but nothing really remarkable. All I know it's difficult for me to focus, especially in tasks like balancing my bank accounts and financial investments, taxes and such. Also constantly losing stuff which sometimes is in plain view, like remotes, glasses. It's frustrating and debilitating to a degree.

posted 17 days ago
A myHIVteam Member said:

Yes, I too have been experiencing similar symptoms. It is quite scary.

posted 7 days ago
A myHIVteam Member said:

I'm having similar issues. I had a brain scan in 2007 and 2019. The comparison shows mild atrophy that they attribute to "normal aging ". It's aggravating as hell.

posted 18 days ago
A myHIVteam Member said:

Looking back mine started prior to diagnosis. I have advanced HIV. I've typed for a living for over 30 years. Yet two years prior to diagnosis, I was unable to coordinate my typing with what was on the page as quickly and efficiently. I found myself doing more backspacing then typing. Immediately after diagnosis, I found myself very apathic and easily distracted. I have to concentrate real hard to remember if I've left the sink running. I stopped cooking on the range unless it's something that can simmer. I've flood our apartment 3 times. I find myself doing most of my research after I've messed something up. I have made my ex husband a total believer and he double checks the important thing. He was in the hospital last month and couldn't rest because he thought I was going to blow the house up. Don't let your doctor blow you off. My Dr can be iffy about it, but I have the job write-ups to make a case.

posted 18 days ago
A myHIVteam Member said:

Hi @A myHIVteam Member.
I was reading on the website and I found this from a article a few years old:
“ People with HIV, even when they are on successful antiretroviral (ARV) treatment, have a greater risk of cognitive decline as they get older compared with what would be expected among the HIV-negative population.”

So even with with taking our meds and controlling our hiv we are still more likely as we age to become more forgetful and confused.

As I said before I noticed a change after I was diagnosed including problems with eye/hand coordination. Among other things I broke my cars rear view mirror because as I was about to simply adjust it I accidentally hit it with my whole and had to replace it.
Also since I’ve been POZ I see words that are spelled correctly and it looks completely wrong. Like I’ve never see that word before.
I’m talking about simple 5-6 letter words I’ve spelled a thousand times before.
Told the doc and because I can’t demonstrate it, it comes and goes, he’s not doing anything about it.
Hope that helps.

edited, originally posted 20 days ago
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