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Anyone dealt with HIV Dementia: friend, lover, self

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hart:
I'm new to the forums.  I am a long term survivor, since 1988 that I know, and probably before that.  I've been taking drugs since day-one, 4-5 years on AZT, which nearly killed me by making my life so miserable. :-\  Seems like I've been on everything since, though I've been pretty stable for the duration.  Got an AIDS diagnosis based only on the fact that my T-Cells dropped below 200 at some point.  They seem to have stabilized between 2-300 since then.  I've not had any opportunistic infections, but have had lots of drug side effects.  One of my hardest things to figure out is what is caused by HIV, the Drugs, or Aging itself.  I often wonder what it would be like to have just aged naturally, what would my body look like now?  How fat would my belly be, how skinny would my legs/arms/face be.  How white would my hair and beard be? blah, blah, blah!

Now I seem to be experiencing some symptoms which I believe might add up to be the beginnings of HIV Dementia... I'm loosing my ability to process language, I can't come up with the words that are right there in my mind, but I can't find them.  I stammer and say UUUMMMMMM allot.  I don't feel it looks too good at work, but they haven't thrown me out yet.  My memory is failing me too, though not as worrisome as the language.  Of course this seems to run in my family, the language thing AND Alzheimer's!  I'm having trouble with my eyes... I just had a thorough eye exam and the ophthalmologist gave me a clean bill of health, they are perfect she said!  I still am having trouble seeing, sort of blurry, sort of spots of blankness, haze around the edges. ???  I've begun to develop these milliseconds of loss of control of my extremedies... while I type here, I have these occasional jerks, the neurologist calls them myotonic jerks... they have ruled out seizures and I've been diagnosed with sleep apnea, which, causing exhaustion has been listed as the cause of these myotonic jerks.  If you add these all up, they sound a lot like; "HIV-associated dementia, characterized by, among other symptoms, memory loss, blurred vision, concentration deficits, speech difficulties and motor impairments."

Have any of you dealt with these symptoms yourself, been diagnosed with HIV-associated dementia, dealt with a friend, family member or lover who had had HIV dementia?  What is your perspective on this, probably the scariest of HIV-associated afflictions that there are... not something that might quickly kill you, but something that will slowly make you loose all semblance of normalcy, your ability to control your self.  Please, provide me with some feedback! :-[

bear60:
Hi
Welcome!
I too am a survivor but I am a Long Term Non Progressor. It is my policy not to speak about something unless I have first hand personal experience with it.
 I do not take HIV meds so I do not talk about that aspect of being HIV positive. (for example)
I have had a friend die recently from PML. His dementia was very subtle and I will say even undetectable. He was having serious thoughts of suicide, but we thought that was a side effect of medications he was taking.  He had emotional outbursts and became angry but not out of the ordinary.  He seemed fine up until the morning he was found naked in his apartment.... unconscious.  He had told us he was having problems focusing on the task at hand...which was moving. He was having trouble packing.  But still, we chalked that up to his being such a multi tasker that he was not properly focused and that everything would "be ok". Boy were we wrong.
In short I cannot help diagnose you because it seems to me dementia is too complex an issue to be easily diagnosed.  You need to talk to your doctor.

hart:
PML?

gaspode:

--- Quote from: hart on August 23, 2007, 04:23:54 PM ---PML?

--- End quote ---

Progressive Multifocal Leukoencephalopathy, a CNS viral opportunistic infection, whose early symptoms can be similar to dementia. Not exclusive to people with HIV but affecting us much more so than other parts of the population. Loads of info out there about it

bear60:
Hart
I should have said that your Cd4 counts are a good predictor of Opportunistic Infections...PML is an opportunistic infection.  Our friend had become resistant to all medications and was enrolled in a Fuzeon study.  He was not able to get his CD4 count above 100.

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