I read your recent article on HAND, which resonates with me, as someone who lives with most of the neurocognitive problems discussed therein. When I first started mentioning these symptoms to my HIV doctors it was usually dismissed as depression. 3 Neuropsych assessments confirmed actual cognitive impairments not consistent with depression. From there the HIV doctors (I see different doctors - they come and go) seem to have read the literature and concluded that it will be at worst stage 2 impairment, since received wisdom says ARV prevents stage 3 dementia.
I believe my case is different. Firstly my HIV went undetected until it was almost too late, with a CD4 of 20 and stage 4 lymphoma. I think some cognitive impairment occurred during this time (15 years ago) so that the argument that ARV prevents stage 3 impairment is only partly true in my case. The doctors seem to think I am a quite comfortable stage 2 HAND case and that anything else is a product of anxiety - I think I'm heading into stage 3, with my age one of a number of additional factors - I'm nearly 62.
I don't expect to be seen by the Neuropsychology people again but have a referral to a Neurologist next month. Based on the above what would be your comments on my assertion that I am an atypical case of HAND and how might I approach the subject next month with the Neurologist and subsequently in discussions with my HIV specialist doctors?
Hi and thanks for writing,
Unfortunately we just don't know a lot about HAND and its progression, and how to distinguish any symptoms from HIV, effects of meds, or aging itself.
You low t-cell nadir certainly puts you at a higher risk. The best protection we have is maintaining an undetectable viral load and avoiding excessive mood-altering chemicals or drugs that affect the brain (for me these include drugs like Ambien).
You have had more extensive neuropsych testing than most people. I couldn't comment on whether your case is atypical or not. I do know that anxiety (unrelated to HIV) can disrupt cognitive functioning (as can depression). I think it would be a good strategy to focus on managing your anxiety and worrying less about stages which, honestly, are not really exact and well-defined.
Wishing you all the best,