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Feb 16, 2008

In a recent reply you wrote, "Regarding peripheral neuropathy (PN), was that diagnosis made by a physician? If not, what you are experiencing may be something quite different."

PN is a fairly sore subject with me, no pun intended. It is also a rather strait forward condition. Almost every Dr. I see regarding my arms and legs that seem to go numb on a whim, immediately shouts "halleluja! I'll take that blank check right now, you have AIDS!"

Well, if PN is an AIDS exclusive, then yes I do. Even though I am HIV antibody negative through 15 years of PN (and 15 years of HIV testing 1/year until 2007, when it became 4/year on a Dr's order, because of PN).

If PN is thought to be exclusive to AIDS, what should I call the burning/numb sensation in my arms, legs and back that is due to injury?

This sensation often "climbs up my legs" balls to bootstraps, so to speak. Actually starting at my boot straps and finally stopping usually where the lumbar meet the thoracic, occassionally continuing as far north as the cervical vertebrae(in these cases, more of a burning sensation across my entire back than a numb sensation). Same condition for 15 years, despite continuously testing HIV -.

Now add in the burning band across my back (about 3 inches from top to bottom) at my waist line. That IS constant. 24/7. It varies in degree from blow torch to buzz but never hits zero. This I still can't definately explain. The arms/legs going numb happens in responce to cold weather and/or miscellaneous foolishness.

These conditions have been attributed to diabetes, AIDS, drugs, the kitchen sink (literally, I'll explain if you allow me a few pages of irrelevance)...

In my experience PN is NOT an HIV exclusive. In fact, it is not normally even caused by the virus in the HIV setting. In regards to HIV, my understanding is that it CAN be caused by the virus itself, but is usually caused by NNRTI's.

One of my girlfriends, who happens to be HIV+ (we didn't meet because of that and I hope will never get intimate because of it either), just simply referred to it as "are you burning?"

I may have misinterpreted your responce (quoted above). If so, I apologize. Perhaps I misinterpret the definition of PN (along with several "trained professionals"). Either way, please explain "may be something quite different." Either it's peripheral nerve disfunction, or it isn't. What am I missing?

Response from Dr. Frascino


I disagree. Peripheral neuropathy is not "a rather 'strait'forward condition." There are many types and multiple potential causes. For instance, what you describe is not at all suggestive of distal sensory peripheral neuropathy seen with HIV and some HIV-related medications! Next, peripheral neuropathy is not at all exclusive to HIV/AIDS! That you have had 15 years of what you believe to be peripheral neuropathy and 15 years of negative HIV testing is very telling. What it tells me is that you have neither peripheral neuropathy nor HIV! That is what you are missing! I suggest you see a competent neurologist for your aches and pains and stop perseverating on HIV.

Dr. Bob

Could there really be a cure?
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