Loss of balance & motor skills


Hi folks at PozHealth.  I have a medical appointment tomorrow where I will attempt to describe to my primary care physician my increasing loss of balance and also what I'm attributing as a difficulty controlling motor skills.

i am a 53 yr old young man, 6'3", 220, and was diagnosed back in 1985.  I am currently undetectable on Intelence (Etravirine) 200 b.i.d. and Epzicom (abacavir + lam) 300 mg once a day.  I have increased bouts of loss of balance and the sensation that I can't continue to walk (particularly in grocery stores for some reason) and notice myself increasingly leaning against the kitchen counter to steady myself.  This is tough, especially when you are very tall.  Swallowing occasionally seems to be an issue.

I am not forgetting anything, my reading ability hasn't changed, my strength seems equally distributed on both sides of my body, vision ok but with the mid-age blurring...   I am noticing a frequent slight tingling in my fingers and toes.  Occasionally it manifests as a growing tightness and tingling up my spine that feels like I might eventually have something like a seizure, although this hasn't happened.  The other day at the grocery store I thought OMG I would be on the floor if I didn't have this cart in front of me....  Can anyone else relate here?

I usually get into my Oregon Kaiser doctor's office here and they kind of blankly give me the "well, there isn't much we can tell you" routine which obviously isn't where I need to go right now.  I urged the Epzicom about two years ago because it crosses the blood brain barrier.  Should I advocate for CNS testing?  Does baseline CSF testing tell you anything about the virus in the brain?  From what I'm reading, adding Marviroc doesn't seem to be helping in neuro issues.  I don't think this is inner ear related but it could be. 

Being a 25 yr survivor I realize that I am on the forefront of new issues.  I thought someone reading this might understand what I'm going through.  I feel like I should be using a walking cane or more and I really don't want to go there. 

Please feel free to contact me offline.  Many thanks.

I miss you Clinic 42 in Minneapolis!  And thanks Nelson for all your work.


-- a new poetry project

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